Patient Groups

What this article is about: This article provides links to patient advocacy groups.

NORD Rare Disease patient group directory

Neurological condition nonprofits

Contents

A-T Ease Foundation, Inc.

217 Thompson Street
Suite 404
New York, NY 10012
[email protected]
Tel: 212-529-0622
Fax: 212-505-8031

Foundation that raises funds in support of research for ataxia telangiectasia.


Accelerated Cure Project for Multiple Sclerosis

460 Totten Pond Rd. Suite 420
Waltham, MA 02451

[email protected]

Tel: 781-487-0008
Fax: 781-487-0009

National nonprofit organization dedicated to accelerating efforts toward a cure for MS. Researchers have access to online resources and the ACP Repository of highly characterized biosamples.


Acid Maltase Deficiency Association (AMDA)

P.O. Box 700248
San Antonio, TX 78270

[email protected]

Tel: 210-494-6144
Fax: 210-490-7161

National non-profit that funds research and promotes public awareness of Pompe disease.


Acoustic Neuroma Association

600 Peachtree Parkway
Suite 108
Cumming, GA 30041

[email protected]

Tel: 770-205-8211; 877-200-8211
Fax: 770-205-0239/877-202-0239

Provides information and support to patients diagnosed with or treated for acoustic neuroma or other benign tumors affecting the cranial nerves.


ADA Disability & Business Technical Assistance Program

401 North Washington Street
Suite 450
Rockville, MD 20805

[email protected]

Tel: 800-949-4232; 301-217-0124
Fax: 301-217-0754

Provides information, guidance and training on the Americans with Disabilities Act (ADA), tailored to meet the needs of business, government and individuals at local, regional and national levels.


Agency for Healthcare Research and Quality (AHRQ)

P.O. Box 8547
Silver Spring, MD 20907-8547

[email protected]

Tel: 703-437-2078; 800-358-9295


Agency for Toxic Substances and Disease Registry

Centers for Disesase Control and Prevention, DHHS

1600 Clifton Rd. MS E-29
Atlanta, GA 30333

Tel: 404-498-0110; 800-232-4636
Fax: 404-498-0093


Aicardi Syndrome Foundation

P.O. Box 3202
St. Charles, IL 60174

[email protected]

Tel: 800-374-8518

Information gathering and sharing resource for professional and health care personnel and Aicardi syndrome families. Sponsors a biennial conference.


Aicardi Syndrome Newsletter, Inc.

1510 Polo Fields Court
Louisville, KY 40245

[email protected]

Tel: 502-244-9152

Newsletter published 2-3 times a year as a sharing resource and source of information for Aicardi Syndrome families.


AIDSInfo (AIDS Information Service)

P.O. Box 4780
Rockville, MD 20849-6303

[email protected]

Tel: 800-HIV-0440 (448-0440); 888-480-3739 (TTY)
Fax: 301-315-2818


Alliance for Aging Research

750 17th Street, N.W.
Suite 1100
Washington, DC 20006

[email protected]

Tel: 202-293-2856
Fax: 202-785-8574

Independent, not-for-profit citizen advocacy organization that works to promote medical research into human aging and to improve the health and independence of older Americans through public and private research.


ALS Association

1275 K Street, N.W.
Suite 250
Washington, DC 20005

[email protected]

Tel: 202-407-8580
Fax: 202-289-6801

Nonprofit voluntary health organization dedicated to the fight against amyotrophic lateral sclerosis. Funds global research and sponsors advocacy programs, a network of chapters, and certified centers and clinics located nationwide.


ALS Therapy Development Institute

300 Technology Square
Suite 400
Cambridge, MA 02139

[email protected]

Tel: 617-441-7200
Fax: 617-441-7299

Founded in 1999, the ALS Therapy Development Foundation is dedicated to discovering and developing treatments for ALS. The organization, which focuses on a concentrated drug discovery program for ALS, has collaborated with 28 for-profit companies and academic researchers to perform advanced investigations.


Alternating Hemiplegia of Childhood Foundation (AHCF)

2000 Town Center
Susite 1900
Southfield, MI 48075

[email protected]

Tel: 313-663-7772; 888-557-5757
Fax: 248-246-1172

Voluntary, non-profit foundation established to support children who are afflicted with AHC and their parents. Supports research, raises funds, and offers a newsletter, brochures, and fact sheets to those interested in knowing more about AHC.


Alzheimer’s Association

225 North Michigan Avenue.
Floor 17
Chicago, IL 60601-7633

[email protected]

Tel: 312-335-8700; 800-272-3900 (24-Hour Helpline); 312-335-5886 (TDD)
Fax: 866.699.1246

National voluntary health organization committed to finding a cure for Alzheimer’s and helping those affected by the disease.


Alzheimer’s Disease Educationand Referral Center (ADEAR)

National Institute on Aging
P.O. Box 8250
Silver Spring, MD 20907-8250

[email protected]

Tel: 1-800-438-4380
Fax: 301-495-3334


Alzheimer’s Foundation of America

322 Eighth Avenue
7th Floor
New York, NY 10001

[email protected]

Tel: 866-AFA-8484 (232-8484)
Fax: 646-638-1546

Works to provide optimal care and services to individuals confronting dementia and to their caregivers and families thruogh member organizations dedicated to improving quality of life.


Alzheimer’s Drug Discovery Foundation

57 West 57th Street
Suite 904
New York, NY 10019

[email protected]

Tel: 212-901-8000
Fax: 212-901-8010

Public charity whose mission is to accelerate the discovery and development of drugs to prevent, treat, and cure Alzheimer’s disease, related dementias, and cognitive aging.


American Association on Health and Disability

110 N. Washington Street
Suite 328-J
Rockville, MD 20850

Tel: 301-545-6140
Fax: 301-545-6144

A cross-disability national non-profit 501(c)(3) organization committed to promoting health and wellness initiatives for children and adults with disabilities; specifically dedicated to integrating public health and disability into the overall public health agenda.


American Autoimmune Related Diseases Association

22100 Gratiot Avenue
Eastpointe, MI 48021-2227

[email protected]

Tel: 586-776-3900; 800-598-4668
Fax: 586-776-3903

National organization that works to alleviate suffering and the socioeconomic impact of autoimmunity. Dedicated to the eradication of autoimmune diseases through fostering and facilitating collaboration in the areas of education, research, and patient services.


American Behcet’s Disease Association

P.O. 80576
Rochester, MI 48308

[email protected]

Tel: 800-7-BEHCETS; 723-4238
Fax: 480-247-5377

Non-profit information and support resource. Provides information to the medical community and works to decrease isolation and stress for people with Behcet’s Disease and their family members.


American Brain Coalition

6257 Quantico Lane N.
Maple Grove, MN 55331

[email protected]

Tel: 763-557-2913
Fax: 860-586-7550

Nonprofit organization comprised of more than 85 of the United States’ leading professional neurological, psychological, and psychiatric associations and , clinicians, researchers, industry, and government agencies. Seeks to advance the understanding of the function of the brain, and to reduce the burden of brain  through public advocacy.


American Brain Tumor Association (ABTA)

8550 W. Bryn Mawr Ave.
Suite 550
Chicago, IL 60631

[email protected]

Tel: 773-577-8750; 800-886-2282
Fax: 847-827-9918

Funds researchers working toward breakthroughs in brain tumor diagnosis, treatment and care, and is a national organization providing comprehensive resources and serving the complex supportive care needs of brain tumor patients and caregivers from diagnosis through treatment and beyond.


American Cancer Society

National Home Office
250 Williams Street, NW
Atlanta, GA 30303-1002

Tel: 800-ACS-2345 (227-2345)

Nationwide community-based voluntary health organization dedicated to eliminating cancer as a major health problem by preventing cancer, saving lives, and diminishing suffering from cancer, through research, education, advocacy, and service.


American Chronic Pain Association (ACPA)

P.O. Box 850
Rocklin, CA 95677-0850

[email protected]

Tel: 916-632-0922; 800-533-3231
Fax: 916-652-8190

Provides self-help coping skills and peer support to people with chronic pain. Sponsors local support groups throughout the U.S. and provides assistance in starting and maintaining support groups.


American Diabetes Association

1701 North Beauregard Street
Alexandria, VA 22311

[email protected]

Tel: 800-DIABETES (342-2383); 703-549-1500

Non-profit health organization providing diabetes research, advocacy services, and information, including information on the complications of diabetes, such as diabetic neuropathy.


American Fibromyalgia Syndrome Association, Inc. (AFSA)

P.O. Box 32698
Tucson, AZ 85715

[email protected]

Tel: 520-733-1570
Fax: 520-290-5550

All-volunteer research- organization that encourages scientific research toward finding the cause of and cure for fibromyalgia syndrome.


American Headache Society Committee for Headache Education (ACHE)

19 Mantua Road
Mt. Royal, NJ 08061

[email protected]

Tel: 856-423-0043
Fax: 856-423-0082

The American Headache Society Committee on Headache Education (ACHE) is a nonprofit patient-health professional partnership dedicated to advancing the treatment and management of patients with headache.


American Heart Association

7272 Greenville Avenue
Dallas, TX 75231-4596

[email protected]

Tel: 800-AHA-USA1 (242-8721); 214-373-6300

National voluntary health agency whose mission is to reduce disability and death from cardiovascular diseases and stroke.


American Liver Foundation

39 Broadway, Suite 2700
New York, NY 10006

[email protected]

Tel: 800-GO LIVER (465-4837); 212-668-1000
Fax: 212-483-8179

National non-profit health agency dedicated to the prevention, treatment, and cure of hepatitis and all liver diseases through research, education, and advocacy.


American Pain Foundation

201 North Charles Street
Suite 710
Baltimore, MD 21201-4111

[email protected]

Tel: 888-615-7246
Fax: 410-385-1832

Independent non-profit information, education, and advocacy organization serving people with pain. Works to improve the quality of life for people with pain by raising public awareness, providing practical information, promoting research, and advocating the removal of barriers and increased access to effective pain management.


American Parkinson Disease Association

135 Parkinson Avenue
Staten Island, NY 10305-1425

[email protected]

Tel: 718-981-8001; 800-223-2732; 877-223-3801 (Young Onset Center)
Fax: 718-981-4399

Seeks to “Ease the Burden – Find the Cure” through  scientific research. Provides comprehensive patient/caregiver support and education.


American Sleep Apnea Association

1717 Pennsylvania Avenue, NW
Suite 1025
Washington, DC 20006

[email protected]

Tel: 888-293-3650
Fax: 888-293-3650

Provides information about sleep apnea to the public, publishes a newsletter, and serves as an advocate for people with the disorder.


American Sleep Association

1002 Lititz Pike, #229
Lilitz, PA 17543

[email protected]

The primary mission of the American Sleep Association is to improve public health by increasing awareness about the importance of sleep and the dangers of sleep disorder.


American Speech-Language-Hearing Association(ASHA)

2200 Research Boulevard
Rockville, MD 20850

[email protected]

Tel: 800-638-8255
Fax: 301-571-0457

Professional, scientific, and credentialing association for audiologists, speech-language pathologists, and speech, language, and hearing scientists. Offers public information about a wide range of speech, language, and hearing disabilities in both children and adults.


American Stroke Association: A Division of American Heart Association

7272 Greenville Avenue
Dallas, TX 75231-4596

[email protected]

Tel: 888-4STROKE (478-7653)
Fax: 214-706-5231

Offers a wide array of programs, products, and services, from patient education materials to scientific statements with cutting-edge information for healthcare professionals.


American Syringomyelia & Chiari Alliance Project (ASAP)

P.O. Box 1586
Longview, TX 75606-1586

[email protected]

Tel: 903-236-7079; 800-ASAP-282 (272-7282)
Fax: 903-757-7456

Non-profit organization that works to improve the lives of people with syringomyelia, Chiari malformations, and related . Publishes a newsletter and offers other written information, videotapes, an annual conference, and other services.


amfAR, The Foundation for AIDS Research

120 Wall Street
13th Floor
New York, NY 10005-3908

[email protected]

Tel: 212-806-1600
Fax: 212-806-1601

Non-profit organization dedicated to the support of AIDS research, HIV prevention, treatment education, and the advocacy of sound AIDS-related public policy.


Angelman Syndrome Foundation

75 Executive Drive
Suite 327
Aurora, IL 60504

[email protected]

Tel: 630-978-4245; 800-432-6435
Fax: 630-978-7408

Works to advance awareness and treatment of Angelman Syndrome through education and information, research, and support.


Angioma Alliance

520 W. 21st Street
Suite G2-411
Norfolk, VA 23517-1950

[email protected]

Tel: 866-HEAL-CCM (432-5226); 757-623-0615

Non-profit charitable organization created by people affected by cavernous angiomas. Provides education and support and promotes research.


Antiepileptic Drug Pregnancy Registry

Massachusetts General Hospital
121 Innerbelt Road Room 220
Somerville, MA 02143

[email protected]

Tel: 888-AED-AED4 (233-2334)
Fax: 617-724-8307

Registry designed to determine what therapies are associated with increased risk of harmful fetal effects. Participation is confidential.


Aphasia Hope Foundation

P.O. Box 79701
Houston, TX 77279

[email protected]

Tel: 855-764-HOPE (855-764-4673)

Charitable foundation that works to increase the public’s awareness of aphasia and the effective long-term treatments available to people with aphasia. Serves as a resource for families, friends, and caregivers.


Ara Parseghian Medical Research Foundation [For Niemann-Pick Type C Disease]

3530 East Campo Abierto
Suite 105
Tucson, AZ 85718-3327

[email protected]

Tel: 520-577-5106
Fax: 520-577-5212

Funds research projects that will lead to a treatment for Niemann-Pick Type C and other pediatric neurological diseases and cholesterol metabolism .


Arthritis Foundation

P.O. Box 7669
Atlanta, GA 30357

[email protected]

Tel: 800-283-7800; 404-872-7100; 404-965-7888
Fax: 404-872-0457

Volunteer-driven organization that works to improve lives through leadership in the prevention, control, and cure of arthritis and related diseases. Offers free brochures on various types of arthritis, treatment options, and management of daily activities when affected.


Association for Frontotemporal Degeneration (AFTD)

Radnor Station Building #2 Suite 320
290 King of Prussia Road
Radnor, PA 19087

[email protected]

Tel: 267-514-7221; 866-507-7222

Nonprofit organization that promotes and funds research into finding the cause and cure for frontotemporal degeneration, also called frontotemporal dementia (FTD); provides information, education, and support to those affected by FTD and their caregivers; and sponsors professional health education programs related to FTD.


Association for Glycogen Storage Disease

P.O. Box 896
Durant, IA 52747

[email protected]

Tel: 563-514-4022
Fax: 563-514-4022

International not-for-profit organization that acts as a focus for individuals with glycogen storage diseases and their families. Works to foster communication between family members, professionals, and others for the purpose of support and information sharing.


Association for Science in Autism Treatment

P.O. Box 1447
Hoboken, NJ 07030

[email protected]

National not-for-profit, 501(c)3 organization formed by a group of parents and professionals concerned about the care and treatment of individuals with autism. ASAT is dedicated to disseminating accurate, scientifically valid information about autism and its treatment options.


Ataxia Telangiectasia (A-T) Children’s Project

5300 W. Hillsboro Blvd.
Suite 105
Coconut Creek, FL 33073

[email protected]

Tel: 954-481-6611; 800-5-HELP-A-T (543-5728)
Fax: 954-725-1153

Non-profit organization that raises funds to support and coordinate biomedical research projects, scientific conferences, and a clinical center aimed at finding a cure for ataxia telangiectasia, a lethal childhood genetic disease.

Ataxia Telangiectasia (A-T) Medical Research Foundation

16224 Elisa Place
Encino, CA 91436

[email protected]

Tel: 818-906-2861
Fax: 818-906-2870

Non-profit organization that funds medical research seeking a therapy and ultimately a cure for ataxia-telangiectasia.


Attention Deficit Disorder Association (ADDA)

P.O. Box 7557
Wilmington, DE 19083-9997

[email protected]

Tel: 800-939-1019
Fax: 800-939-1019

Non-profit organization focused on the needs of adults and young adults with ADD/ADHD, their children, and families.


Autism National Committee (AUTCOM)

P.O. Box 429
Forest Knolls, CA 94933

Works to protect and advance the human rights and civil rights of all persons with autism, Pervasive Developmental Disorder, and related differences of communication and behavior.


Autism Research Institute (ARI)

4182 Adams Avenue
San Diego, CA 92116

[email protected]

Tel: 619-281-7165; 866-366-3361
Fax: 619-563-6840

Conducts research and disseminates research-based information on the cause, prevention, and treatment of autism and related .


Autism Science Foundation

28 West 39th Street
Suite 502
New York, NY 10018

[email protected]

Tel: 212-391-3913
Fax: 212-228-3557

Provides and other assistance to scientists and organizations conducting, facilitating, publicizing and disseminating autism research and serves to increase awareness of autism spectrum  and the needs of individuals and families affected by autism.


Autism Society of America

4340 East-West Highway
Suite 350
Bethesda, MD 20814

Tel: 301-657-0881; 800-3AUTISM (328-8476)
Fax: 301-657-0869

Promotes lifelong access and opportunities for persons within the autism spectrum and their families through advocacy, public awareness, education, and research programs.


Autism Society of America Foundation

4340 East-West Hwy
Suite 350
Bethesda, MD 20814

Tel: 301-657-0881; 800-3-AUTISM (328-8476)
Fax: 301-657-0869

Research arm of the Autism Society of America. Raises and provides funds to support biomedical and applied autism research.


Autism Speaks, Inc.

1 East 33rd Street
4th Floor
New York, NY 10016

[email protected]

Tel: 212-252-8584; 888-288-4762
Fax: 212-252-8676

Nonprofit organization dedicated to finding the causes, prevention, effective treatment and, ultimately, a cure for autism spectrum . Provides research grants and fellowships and sponsors scientific conferences.


Autism Tissue Program

5455 Wilshire Blvd., Suite 2250
Autism Speaks
Los Angeles, CA 90036

[email protected]

Tel: 877-333-0999
Fax: 858-694-0748

Provides donated tissue for biomedical research.


Bachmann-Strauss Dystonia & Parkinson Foundation

P.O. Box 38016
Albany, NY 12203

[email protected]

Tel: 212-509-0995
Fax: 212-987-0662

Non-profit foundation that supports patients, family members, researchers, clinicians, and volunteers working in partnership to find better medical treatments and a cure for dystonia and Parkinson’s disease.


Barth Syndrome Foundation, Inc.

2005 Palmer Avenue #1033
Larchmont, NY 10538

[email protected]

Tel: 914-303-6323; 855-662-2784
Fax: 518-213-4061

Supports families and individuals affected by Barth syndrome through education, awareness, and research grant programs. Works with physicians to improve diagnosis and treatment and stimulates scientific advances ultimately in pursuit of a cure.


Batten Disease Support and Research Association

2780 Airport Drive, Suite 342
Columbus, OH 43219

[email protected]

Tel: 800-448-4570
Fax: 866-648-8718

International support and research networking organization for families of children and young adults with Batten Disease. Sponsors education, advocacy, and support programs. Funds research, and sponsors a tissue donation program.


Benign Essential Blepharospasm Research Foundation

637 North 7th Street Suite 102
P.O. Box 12468
Beaumont, TX 77726-2468

[email protected]

Tel: 409-832-0788
Fax: 409-832-0890

Works to undertake, promote, develop, and carry on the search for the cause and a cure for benign essential blepharospasm and other related  and infirmities of the facial musculature.


Birth Defect Research for Children, Inc.

976 Lake Baldwin Lane
Suite 104
Orlando, FL 32814

[email protected]

Tel: 407-895-0802

Non-profit organization that offers parents and expectant parents information about specific birth defects, their causes and treatments, support group referrals, and parent matching services. Provides information about environmental exposures that may be associated with birth defects. Sponsors the National Birth Defect Registry, a research project that collects data on birth defects and prenatal/lpreconceptual exposures of mothers and fathers.


Blast Injury Research Program Coordinating Office

Attention: MCMR-RTB
810 Schroeder Street
Fort Detrick, Maryland 21702

Tel: 301-619-9801

Department of Defense office that disseminates the latest information on medical research for the prevention, mitigation, and treatment of blast injuries.


BlazeSports America

1670 Oakbrook Druve
Suite 331
Norcross, GA 30093

[email protected]

Tel: 404-270-2000

BlazeSports mission is to advance the lives of children and adults with physical disabilities through sport, healthy lifestyles, and the prevention of chronic health conditions.


Brain and Tissue Bank for Developmental  (FL)

University of Miami Miller School of MedicineDepartment of Pathology (R-5)
P.O. Box 016960
Miami, FL 33101

[email protected]

Tel: 800-59BRAIN (592-7246)
Fax: 305-243-4086

Collects samples from patients with a variety of genetic and developmental , patients with related , and age-matched controls. The material is used by investigators studying diseases that affect normal brain.


Brain Aneurysm Foundation

269 Hanover Street, Building 3
Hanover, MA 02339

[email protected]

Tel: 781-826-5556; 888-BRAIN02 (272-4602)

The Brain Aneurysm Foundation is the nation’s only nonprofit organization solely dedicated to providing critical awareness, education, support and research  to reduce the incidence of brain aneurysms.


Brain Injury Association of America, Inc.

1608 Spring Hill Rd
Suite 110
Vienna, VA 22182

[email protected]

Tel: 703-761-0750; 800-444-6443
Fax: 703-761-0755

Non-profit organization dedicated to people with brain injury and their families. Offers research, education, and advocacy programs through a national office, network of state affiliates, support groups, and a helpline.


Brain Injury Resource Center

P.O.Box 84151
Seattle, WA 98124

[email protected]

Tel: 206-621-8558
Fax: 206-329-4355

Non-profit clearinghouse founded and operated by head injury activists. Offers information, discussion groups, programs for building advocacy and self-care skills, and referrals to additional information and resources.


Brain Resources and Information Network (BRAIN)

National Institute of Neurological  & Stroke
P.O. Box 5801
Bethesda, MD 20824

[email protected]

Tel: 800-352-9424
Fax: 301-402-2186


Brain Trauma Foundation

1999 S. Bascom Avenue
Suite 1040
Campbell, CA 95008

[email protected]

Tel: 408-369-9735
Fax: 408-369-9865

Nationwide organization devoted to improving the outcome of traumatic brain injury patients. Focuses on the acute phase of traumatic brain injury (TBI) and methods to improve chances of a meaningful recovery. The Foundation works to improve the care of TBI patients from the scene of injury to the emergency room and ICU through guidelines development, professional education, quality improvement, and clinical research.

124 Watertown Street
Suite 2D
Watertown, MA 02472-2500

[email protected]

Tel: 617-924-9997; 800-770-TBTS (8287)
Fax: 617-924-9998

National non-profit providing resources and services to patients, survivors, friends, and professionals. Also funds basic science and translational brain tumor research.


Brave Kids [For Children With Special Needs]

1825 K Street NW
Suite 600
Washington, DC 20006

[email protected]

Tel: 800-872-5827

Non-profit organization that serves the needs of children with chronic and life-threatening illnesses and disabilities. Provides a comprehensive directory of health services, relevant medical information from healthcare professionals and message boards for children with special needs. Brave Kids also provides educational outreach and family resource centers to assist parents in locating healthcare resources for their ill children.

BridgeMar Research Foundation

P.O. Box 341
Crete, IL 60417

[email protected]

Tel: 708-672-7599

Non-profit organization dedicated to raising money to fund research into the BridgeMar Syndrome and undiagnosed childhood genetic .


BrightFocus Foundation

22512 Gateway Center Drive
Clarksburg, MD 20871

[email protected]

Tel: 1- 800-437-2423
Fax: 301-258-9454

Non-profit charitable organization dedicated to  research and educating the public on Alzheimer’s disease, glaucoma, and macular degeneration.


Canavan Disease Research

P.O. Box 5823
Buffalo Grove, IL 60089

[email protected]

Tel: 800-833-2194

Non-profit organization that funds research, works to raise public awareness, and offers services in support of families affected by Canavan disease.


Canavan Foundation, Inc.

450 West End Avenue
#6A
New York, NY 10024

[email protected]

Tel: 212-873-4640; 877-4-CANAVAN (422-6282)
Fax:212-873-7449

Works to educate target population about genetic screening available for Canavan disease and other Jewish genetic diseases, and supports research to find a treatment and cure for Canavan disease.


Canavan Research Foundation

88 Route 37
New Fairfield, CT 06812

[email protected]

Tel: 203-746-2436
Fax:203-746-3205

All volunteer non-profit organization that funds research leading to treatments and or a cure for diseases of the brain. Currently funds research in gene therapy, stem cell therapy, and metabolic approaches. Offers information and sponsors parent support programs.


Cancer Care

275 Seventh Avenue
New York, NY 10001

[email protected]

Tel: Business: 212-712-8400; Services: 800-813-HOPE (4673)
Fax:212-712-8495

Provides free professional support to people with cancer, family members, loved ones, and the bereaved, all across the country. Services include: counseling, support groups, educational programs, publications, and financial assistance.


Caregiver Action Network (formerly National Family Caregiver Association)

1130 Connecticut Avenue, NW
Suite 500
Washington, DC 20036

[email protected]

Tel: 202-454-3970

Grassroots organization dedicated to supporting and improving the lives of America’s family caregivers. Created to educate, support, empower, and advocate for the millions of Americans who care for their ill, aged, or disabled loved ones.


Carter Centers for Brain Research in Holoprosencephaly

c/o Texas Scottish Rite Hospital P.O. Box 190567

2222 Welborn Street
Dallas, TX 75219-9982

[email protected]

Tel: 214-559-8411; 800-241-1121 (x8411)
Fax:214-559-8383

Collaborative initiative created to gather, analyze, and share information about HPE. Maintains an international registry and an ongoing HPE database. Supports and conducts research and maintains a network of Centers of Excellence.


Center for Scientific Review

National Institutes of Health, DHHS
6701 Rockledge Drive, MSC 7768
Bethesda, MD 20892-7768

[email protected]

Tel: 301-435-1115


Centers for Disease Control and Prevention (CDC)

U.S. Department of Health and Human Services

1600 Clifton Road
Atlanta, GA 30333

[email protected]

Tel: 800-311-3435; 404-639-3311; 404-639-3543


Centers for Medicare and Medicaid Services (CMS)

U.S. Department of Health and Human Services
7500 Security Blvd.
Baltimore, MD 21244-1850

Tel: 410-786-3000; 877-267-2323


Cerebral Palsy Foundation

3 Columbus Circle, 15th Floor
New York, NY 10019

[email protected]

Tel: 212-520-1686
Fax:917-599-0431

Dedicated to  research and educational activities relevant to discovering cause, cure, and evidence based care for individuals with CP and related developmental disabilities.


CHADD – Children and Adults with Attention-Deficit/Hyperactivity Disorder

4601 Presidents Drive
Suite 300
Lanham, MD 20706

[email protected]

Tel: 301-306-7070; 800-233-4050
Fax:301-306-7090

Works to improve the lives of people affected by attention-deficit/hyperactivity disorder (AD/HD) through collaborative leadership, advocacy, research, education, and support and offers the National Resource Center on AD/HD at www.help4adhd.org.


Charcot-Marie-Tooth Association (CMTA)

P.O. Box 105
Glenolden, PA 19036

[email protected]

Tel: 800-606-CMTA (2682)
Fax:610-499-9267

Provides education and support to persons with Charcot-Marie-Tooth , their families, and the health professionals who treat them.


Chiari & Syringomyelia Foundation

29 Crest Loop
Staten Island, NY 10312

[email protected]

Tel: 718-966-2593
Fax:718-966-2593 (Call First)

Nonprofit organization committed to disseminating accurate and current information about treatments for and best practices surrounding the management of Chiari malformation, syringomyelia & related cerebrospinal fluid .


Child Neurology Foundation

201 Chicago Avenue, Suite 200
Minneapolis, MN 55415

[email protected]

Tel: 612-928-6325

Nonprofit advocacy organization committed to serving as a collaborative center of education and support for childrne and families living eith neurologic conditions.


Childhood Brain Tumor Foundation

20312 Watkins Meadow Drive
Germantown, MD 20876

[email protected]

Tel: 877-217-4166; 301-515-2900

Non-profit organization that raises funds for scientific and clinical research to improve both prognosis and quality of life for those affected by pediatric brain tumors. Works to heighten public awareness and provides information and resources for families and patients.


Children’s Brain Tumor Foundation

274 Madison Avenue
Suite 1004
New York, NY 10016

[email protected]

Tel: 212-448-9494; 866-CBT-HOPE (228-4673)
Fax:212-448-1022

Works to improve the treatment, quality of life, and long-term outlook for children with brain and spinal cord tumors through research, support, education, and advocacy programs.


Children’s Gaucher Research Fund

P.O. Box 2123
Granite Bay, CA 95746-2123

[email protected]

Tel: 916-797-3700
Fax:916-797-3707

Grassroots non-profit organization that supports research efforts on Types 2 and 3 Gaucher disease.


Children’s Hemiplegia and Stroke Assocn. (CHASA)

4101 West Green Oaks Blvd., Ste. 305
PMB 149
Arlington, TX 76016

[email protected]

Tel: 817-492-4325

CHASA is a 501(c)(3) nonprofit organization dedicated to improving the lives of children and families affected by pediatric stroke and other causes of hemiplegia. Offers national family retreat, local family events and seminars, online support group, websites, fact sheets, clinical study information, and pediatric stroke awareness campaigns.


Children’s Tumor Foundation

120 Wall Street
16th Floor
New York, NY 10005

[email protected]

Tel: 800-323-7938; 212-344-6633
Fax:212-747-0004

Non-profit medical foundation dedicated to improving the health and well being of individuals and families affected by the neurofibromatoses. Sponsors scientific research; promotes the development of clinical activities; develops public awareness programs; and provides support services and referrals for patients and families. Formerly known as the National Neurofibromatosis Foundation.


Chordoma Research Foundation

26 Forest Way
Clifton, NJ 07013

[email protected]

Tel: 973-337-2870

A nonprofit group whose mission is to advance research on chordoma, a type of tumor that grows in brain and spinal cord.


Christopher and Dana Reeve Foundation

636 Morris Turnpike
Suite 3A
Short Hills, NJ 07078

[email protected]

Tel: 973-379-2690; 800-225-0292
Fax:973-912-9433

The Reeve Foundation is dedicated to curing spinal cord injury by  innovative research, and improving the quality of life for people living with paralysis through grants, information and advocacy.


Citizens United for Research in Epilepsy (CURE)

223 W. Erie
Suite 2 SW
Chicago, IL 60654

[email protected]

Tel: 312-255-1801; 800-765-7118
Fax:312-255-1809

Non-profit grassroots organization formed by parents and families to raise funds for epilepsy research.


CJD Aware!

2527 South Carrollton Ave.
New Orleans, LA 70118-3013

[email protected]; [email protected]

Tel: 504-861-4627

Non-profit organization established for support, information sharing, and advocacy.


Clearinghouse on Disability Information

Special Education & Rehabilitative Services Communications & Customer Service Team

550 12th Street, SW, Rm. 5133
Washington, DC 20202-2550

Tel: 202-245-7307; 202-205-5637 (TTD)
Fax:292024507636


Coalition for Safe Minds [Mercury Exposure Resource]

P.O. Box 285
Huntington Beach, CA 92649

[email protected]

Tel: 404-934-0777
Fax:770-631-9380

Non-profit organization founded by parents to investigate and raise awareness of the risks to infants and children of exposure to mercury from medical products, including thimerosal in vaccines.


Coalition to Cure Calpain 3 (C3)

15 Compo Parkway
Westport, CT 06880

[email protected]

Tel: 203-221-1611
Fax:734-668-4755

A voluntary health organization that provides support for promising research into finding treatments or a cure for limb-girdle muscular dystrophy, type 2A/calpainopathy (LGMD2A).


Cody Unser First Step Foundation

P.O. Box 56696
Albuquerque, NM 87187

[email protected]

Tel: 505-999-9550

Non-profit organization dedicated to raising research funds, public awareness, and quality of life for those afflicated with all forms of spinal cord-related paralysis. Focuses on the cause, rehabilitation, prevention, and cure for transverse myelitis.


Coffin-Lowry Syndrome Foundation

675 Kalmia Place, NW
Issaquah, WA 98027

[email protected]

Tel: 425-427-0939

Clearinghouse for information on CLS. Provides a general forum for exchanging experiences, advice, and information with other CLS families. Works to facilitate referrals of newly diagnosed individuals and to encourage medical and behavioral research in order to improve methods of social integration of CLS individuals.


Compassionate Friends

1000 Jorie Boulevard
Suite 140
Oak Brook, IL 60522-3696

[email protected]

Tel: 877-969-0010
Fax:630-990-0246

National, independent, nonprofit, self-help support organization offering friendship and understanding to families grieving the death of a child of any age, from any cause. There are no membership fees or dues, and parents, grandparents, and adult siblings are welcome.


Creutzfeldt-Jakob Disease (CJD) Foundation Inc.

3610 W. Market Street, Suite 110
Akron, OH 44333

[email protected]

Tel: 800-659-1991
Fax:234-466-7077

Non-profit, volunteer foundation that promotes research, education, and awareness of CJD and reaches out to people affected by CJD.


Cure CMD

P.O. Box 701
Olathe, KS 66051

[email protected]

Tel: 424-265-0874

Cure CMD’s mission is to bring research, treatments and in the future, a cure for Congenital Muscular Dystrophies. Cure CMD will achieve this mission by working globally together with dedicated parent, government and research advocates. By focusing on this mission, Cure CMD will find and fund high potential research and clinical trials. Success will be determined by clinical applications that improve the lives of those afflicted with CMD’s.


Cure SMA

925 Busse Road
Elk Grove Village, IL 60007

[email protected]

Tel: 800-886-1762
Fax:847-367-7623

International non-profit foundation dedicated to accelerating the development of a treatment or cure for SMA through the  of research, drug discovery programs, and clinical trials. Assists families through informational programs and support services; sponsors an equipment pool; and educates the public and the medical community about SMA.


cureCADASIL Association

10 Schalks Crossing Road
Suite 501A-133
Plainsboro, NJ 08536

[email protected]

Tel: 307-215-9840

The mission of the CADASIL Association is to raise awareness of CADASIL, ensuring it will be universally recognized and understood by the medical community, enabling patients to be correctly diagnosed. We are dedicated to helping patients, families, caregivers, and other supporters touched by CADASIL.


CurePSP

30 E. Padonia Road
Suite 201
Timonium, MD 21093

[email protected]

Tel: 410-785-7004; 800-457-4777
Fax:410-785-7009

CurePSP is the leading source of information and support for patients and their families, other caregivers, researchers and healthcare professionals on prime of life neurodegeneration including PSP, CBD and related diseases. A nonprofit voluntary health organization whose mission is to increase awareness of progressive supranuclear palsy, corticobasal degeneration and related brain diseases (including atypical parkinsonisms); fund research toward cure and prevention; educate healthcare professionals; and provide support, information and hope for affected persons and their families.


Cushing’s Support and Research Foundation

60 Robbins, #12
Plymouth, MA 02360

[email protected]

Tel: 617-723-3674
Fax:same as phone

Provides information and support for Cushing’s Disease and Cushing’s Syndrome patients and their families and works to increase awareness and educate the public.


Cyclic Vomiting Syndrome Association

10520 W. Bluemound Road
Milwaukee, WI 53226

[email protected]

Tel: 414-342-7880
Fax: 414-342-8980

International network for patients, family members, and professionals that offers support, networking, and education for patients, families, and professionals affected by CVS. Promotes, facilitates, and funds medical research about CVS.


Dana Foundation

505 Fifth Avenue
6th Floor
New York, NY 10017

[email protected]

Tel: 212-223-4040
Fax:212-593-7623

Supports brain research through grants, educates the public about the successes and potential of brain research, and produces free publications.


Dandy-Walker Alliance, Inc.

10325 Kensington Pkwy.
Suite 384
Kensington, MD 20895

[email protected]

Tel: 877-Dandy-Walker (326-3992)

Nonprofit organization committed to educational and informational activities, programs and publications, and supporting non-partisan research and events to increase public awareness for Dandy-Walker. Supports all efforts to determine the cause(s) of, find the cure for and to ameliorate the effects of Dandy-Walker.

Daniel Heumann Fund for Spinal Cord Research

6516 Truman Lane
#100
Falls Church, VA 22043-1821

Tel: 703-442-8797
Fax:703-448-6914

Funds breakthrough research to find a cure for paralysis caused by spinal cord injury.


Davis Phinney Foundation

4730 Table Mesa Drive
Suite J-200
Boulder, CO 80305

[email protected]

Tel: 866-358-0285; 303-733-3340
Fax:303-733-3350

Dedicated to helping people with Parkinson’s disease to live well today. Provides information, inspiration, tools, resources, and opportunities to people living with PD and care partners to better manage their disease and promote increased engagement in health.


Department of Agriculture (USDA)

National Agricultural Library
10301 Baltimore Avenue
Beltsville, MD 20705-2351

Tel: 301-504-5755; 301-504-6856 (TTY)
Fax:301-504-6927


Department of Health and Human Services

200 Independence Avenue, S.W.
Washington, DC 20201

Tel: 202-619-0257; 877-696-6775


Department of Veterans Affairs (VA)

Public Affairs & Intergovernment Affairs Consumer Affairs Service (075B)
810 Vermont Avenue, N.W.
Washington, DC 20420

[email protected]

Tel: 202-273-5770; 800-827-1000


Diann Shaddox Foundation for Essential Tremor

241 Boxelder Drive
Aiken, SC 29803

[email protected]

Tel: 803-761-2860
Fax:803-641-0640


Disability Resources

Four Glatter Lane
Centereach, NY 11720-1032

[email protected]

Tel: 631-585-0290
Fax:same

Non-profit organization that works to promote and improve awareness, availability, and accessibility of information to help people with disabilities live, learn, work, and play independently. Disseminates information through a newsletter, a guide to toll-free telephone resources, a website, and other tools.


Disabled American Veterans

PO Box 14301
Cincinnati, OH 45250-0301

Tel: 877-I AM A Vet (877-426-2838); 859-441-7300

Works to better the lives of disabled veterans and their families by providing assistance in obtaining benefits and services earned through military service.


Disabled Sports USA

451 Hungerford Drive
Suite 100
Rockville, MD 20850

[email protected]

Tel: 301-217-0960
Fax:301-217-0968

Member of the U.S. Olympic Committee that provides sports rehabilitation programs for individuals with physical disabilities and provides training and competition for athletes with disabilities who compete in Paralympic Games.


Dravet Syndrome Foundation

P.O. Box 16536
West Haven, CT 06516

Tel: 203-392-1950

Dedicated to aggressively raising research funds for Dravet syndrome, a rare and catastrophic form of epilepsy beginning in childhood, and related conditions.


Dysautonomia Foundation

315 W. 39th Street
Suite 701
New York, NY 10018

[email protected]

Tel: 212-279-1066
Fax:212-279-2066

Non-profit organization that supports medical research grants and clinical care; provides information; and offers chapters nationwide and overseas.


Dysautonomia International

P.O. Box 596
East Moriches, NY 11940

[email protected]

Organization founded in 2012 by patients, caregivers, physicians and researchers dedicated to assisting people living with various forms of dysautonomia and increasing awareness of different medical conditions that cause a malfunction of a person’s autonomic nervous system . More importantly, Dysautonomia International is dedicated to finding a cure and better treatments for each form of dysautonomia.


Dysautonomia Youth Network of America, Inc.

1301 Greengate Court
Waldorf, MD 20601

[email protected]

Tel: 301-705-6995
Fax:301-638-DYNA

Nonprofit support and outreach network dedicated to serving youth diagnosed with various dysautonomia conditions. Provides peer and educational support, serves as a member forum for parents and youth, and sponsors a summer conference.


Dystonia Medical Research Foundation

One East Wacker Drive
Suite 1730
Chicago, IL 60601-1985

[email protected]

Tel: 312-755-0198
Fax:312-803-0138

Non-profit medical research foundation that funds research, advances awareness, and provides education and support on dystonia, a movement disorder.


Easter Seals

233 South Wacker Drive
Suite 2400
Chicago, IL 60606

[email protected]

Tel: 312-726-6200; 800-221-6827
Fax:312-726-1494

Provides services to help children and adults with disabilities and/or special needs as well as support to their families. Supports the National AgrAbility Project, a program for farmers, ranchers, and farm workers with disabilities.


Eldercare Locator

U.S. Department of Health and Human Services
Administration on Aging

[email protected]

Tel: 800-677-1116


Elizabeth Glaser Pediatric AIDS Foundation

1140 Connecticut Avenue, NW
Suite 200
Washington, DC 20036

[email protected]

Tel: 202-296-9165; 888-499-HOPE (4673)
Fax:202-296-9185

Sponsors research programs, collaborative training initiatives, advocacy efforts, and international programs focused on pediatric AIDS and other serious and life-threatening diseases affecting children.


Environmental Protection Agency

1200 Pennsylvania Avenue, N.W
Ariel Rios Building
Washington, DC 20460

Tel: 202-272-0167


Epilepsy Foundation

8301 Professional Place East, Suite 200
Landover, MD 20785-2353

[email protected]

Tel: 301-459-3700; 800-EFA-1000 (332-1000)
Fax:301-577-2684

National charitable organization dedicated to the welfare of people with epilepsy. Works to ensure that people with seizures are able to participate in all life experiences; to improve how people with epilepsy are perceived, accepted and valued in society; and to promote research for a cure. Offers a Legal Defense Program through a fund.


Epilepsy Institute

257 Park Avenue South
New York, NY 10010

[email protected]

Tel: 212-677-8550
Fax:212-677-5825

Non-profit organization that provides comprehensive social services and resources for people with epilepsy and their families.


Epilepsy Therapy Project

P.O. Box 742
N. Pendleton Street
Middleburg, VA 20118

[email protected]

Tel: 540-687-8077
Fax:540-687-8066

Nonprofit corporation that works to advance new treatments for people living with epilepsy. Supports innovative research in academia and industry. Provides information through the www.epilepsy.com website.


Exceptional Parent Magazine[Disability Resource]

6 Pickwick Lane
Woodcliff Lake, NJ 07677

[email protected]

Tel: 800-EPARENT (372-7368)
Fax:201-746-0179

Magazine that provides information, support, ideas, encouragement, and outreach for parents and families of children with disabilities and the professionals who work with them.


Fabry Support & Information Group

108 NE 2nd Street, Ste. C
P.O. Box 510
Concordia, MO 64020-0510

[email protected]

Tel: 660-463-1355
Fax:660-463-1356

Non-profit support and information group that works to raise awareness of Fabry disease and its symptoms. Offers a variety of self-help, educational, and advocacy initiatives and programs in an effort to enhance identification, diagnosis, and treatment of Fabry disease.


Facioscapulohumeral Muscular Dystrophy (FSH) Society

64 Grove Street
Watertown, MA 02472

[email protected]

Tel: 617-658-7877
Fax:617-658-7879

Facilitates support groups, publishes a newsletter, organizes conferences and meetings, and awards research grants towards the prevention, cause and treatment of FacioScapuloHumeral muscular dystrophy worldwide. Provides public awareness of FSHD by providing information, referrals, education, and advocacy programs and services. Promotes collaborative research and collects and disseminates research information.


Familial Dysautonomia Hope Foundation, Inc. (FD Hope)

121 South Estes Drive
Suite 205-D
Chapel Hill, NC 27514-2868

[email protected]

Tel: 919-969-1414

Non-profit organization that works to expand and accelerate research towards a cure for familial dysautonomia and to improve the lives of children and adults challenged by the disease. Funds research programs, provides a support network for patients and families, and promotes education and awareness in the medical community and public.


Family Caregiver Alliance/National Center on Caregiving

785 Market St.
Suite 750
San Francisco, CA 94103

[email protected]

Tel: 415-434-3388; 800-445-8106
Fax:415-434-3508

Supports and assists families and caregivers of adults with debilitating health conditions. Offers programs and consultation on caregiving issues at local, state, and national levels. Offers free publications and support online, including a national directory of publicly funded caregiver support programs.


Fibromuscular Dysplasia Society of America (FMDSA)

20325 Center Ridge Road Suite 620
Rocky River, OH 44116

[email protected]

Tel: 216-834-2410; 888-709-7089

We are a voluntary, not-for-profit organization and programs like these can not succeed without your support. Through volunteerism, membership, financial contributions, and event participation, the FMDSA can fulfill our vision and improve the quality of life of those affected by Fibromuscular Dysplasia.


FOCUS Families

228 E. Palomino Court
Gilbert, AZ 85296

[email protected]

Tel: 866-FOCUS-50 (866-362-8750)
Fax:866-362-8750

Worldwide organization that helps parents and caregivers with children who have Optic Nerve Hypoplasia (ONH) and Septo-Optic Dysplasia, (SOD), also known as deMorsier syndrome. Offers a journal, national convention, regional family advisors, and educational materials.


Fogarty International Center

National Institutes of Health, DHHS
31 Center Drive, Rm. B2C29 MSC 2220
Bethesda, MD 20892-2220

[email protected]

Tel: 301-496-2075
Fax:301-594-1211


Food and Drug Administration (FDA)

U.S. Department of Health and Human Services
5600 Fishers Lane, CDER-HFD-240
Rockville, MD 20857

Tel: 301-827-4573; 888-INFO-FDA (463-6332)


Foundation Fighting Blindness

7168 Columbia Gateway Drive
Suite 100
Columbia, MD 21046

[email protected]

Tel: 800-683-5555

Works to discover the causes, treatments, preventions, and cures for a number of  involving retinal degeneration. Funds research, sponsors conferences, and offers information to the public and professionals.


Foundation for Peripheral Neuropathy

485 Half Day Road
Suite 350
Buffalo Grove, IL 60089

[email protected]

Tel: 877-883-9942
Fax:847-883-9960

A 501(c)(3) public foundation whose mission is to dramatically improve the lives of people living with peripheral neuropathy, to be the catalyst for advancing innovative therapeutic developments and accelerating a cure for painful neuropathies by  collaborative efforts of leading scientists and physicians, and to develop outreach programs to patients, their families and healthcare professionals.


FRAXA Research Foundation [for Fragile X Syndrome]

45 Pleasant Street
Newburyport, MA 01950

[email protected]

Tel: 978-462-1866
Fax:978-463-9985

Funds research, sponsors education and support programs on Fragile X syndrome, the most common inherited cause of mental retardation and developmental disabilities.


Friedreich’s Ataxia Research Alliance (FARA)

533 W. Uwclan Avenue
Downington, VA 22151

[email protected]

Tel: 703-426-1576
Fax:(703) 425-0643

National non-profit organization dedicated to the pursuit of educational, scientific and research activities leading to treatments for Friedreich’s ataxia.


Friend’s Health Connection

P.O. Box 114
New Brunswick, NJ 08903

[email protected]

Tel: 732-418-1811; 800-483-7436
Fax:732-249-9897

Non-profit support network that connects people with similar health problems and helps individuals cope with illness through the power of friendship.


GBS/CIDP Foundation International

375 East Elm Street
Suite 101
Conshohocken, PA 19428

[email protected]

Tel: 610-667-0131; 866-224-3301
Fax:610-667-7036

Voluntary, nonprofit organization that provides support to patients with Guillain-Barré and their families, awards grants to researchers, and offers educational materials to the public and professional communities.


Genetic Alliance

4301 Connecticut Avenue, N.W.
Suite 404
Washington, DC 20008-2369

[email protected]

Tel: 202-966-5557; 800-336-GENE (4363)
Fax:202-966-8553

International coalition representing 600 consumer and professional organizations. Supports individuals and families with genetic conditions; educates the public; and advocates for consumer-informed public policies.


Genetic and Rare Disease Information Center

National Center for Advancing Translational Sciences
P.O. Box 8126
Gaithersburg, MD 20898-8126

[email protected]

Tel: 888-205-2311


Genetic and Rare Diseases Information Center (GARD)

National Institutes of Health, DHHS
P.O. Box 8126
Gaithersburg, MD 20898-8126

Tel: 888-205-2311


Global Foundation for Peroxisomal

5147 S. Harvard Avenue, Suite 181
Tulsa, OK 74135

[email protected]

Tel: 918-230-7713
Fax:918-516-0227

The mission of the GFPD is to help children and families faced with a Peroxisome Biogenesis Disorder – Zellweger Spectrum Disorder (PBD-ZSD) diagnosis and to assist family members and professionals through educational programs, research, and support services.


Guthy-Jackson Charitable Foundation

10525 Vista Sorrento Parkway
Suite 210
San Diego, CA 92123

[email protected]

Tel: 858-638-7638

The Guthy-Jackson Charitable Foundation is dedicated to  research to understand the pathophysiology and biochemistry of Neuromyelitis Optica (NMO) Spectrum Disease.


Hannah’s Hope Fund

19 Blue Jay Way
Rexford, NY 12148

Tel: 518-275-5359

Nonprofit charity whose mission is to raise funds to support the development of a treatment and cure for GAN, and to be the resource for doctors, scientists and families world-wide.


Hazel K. Goddess Fund for Stroke Research in Women

785 Park Road, #3E
New York, NY 10021

[email protected]

Non-profit organization that focuses on critical issues specific to stroke in women, including research, prevention, treatment, education, and advocacy.


Health Resources and Services Administration (HRSA) Information Center

U.S. Department of Health and Human Services
Parklawn Bldg., 5600 Fishers Lane
Rockville, MD 20857

[email protected]

Tel: 888-Ask-HRSA (275-4772)


Heart Rhythm Society

1325 G Street, N.W.
Suite 400
Washington, DC 20005

[email protected]

Tel: 202-464-3454
Fax:202-464-3405

Nonprofit organization dedicated to reducing death and disability due to heart rhythm , such as atrial fibrillation.


HEATH Resource CenterThe George Washington University

2134 G Street, NW
Washington, DC 20052

[email protected]

Tel: 202-973-0904 ; 800-544-3284
Fax:202-994-3365

National clearinghouse on postsecondary education for individuals with disabilities. Serves as an information exchange resource for educational support services, policies, procedures, adaptations, and opportunities at American campuses, vocational-technical schools, and other postsecondary training entities.


Hereditary Disease Foundation

3960 Broadway
6th Floor
New York, NY 10032

[email protected]

Tel: 212-928-2121
Fax:212-928-2172

Non-profit basic science organization dedicated to the cure of genetic disease. All publicly donated funds are directed toward the support of biomedical research.


Hereditary Neuropathy Foundation, Inc

432 Park Avenue South
4th Floor
New York, NY 10128

[email protected]

Tel: 855-HELPCMT (435-7268); 212-722-8396

Dedicated to raising awareness,  innovative research and improving quality of life for those with Charcot-Marie-Tooth (CMT) disorder, their families, and caregivers by offering medical information to help manage the CMT as well as emotional support.


HHV-6 Foundation

1482 East Valley Road
Suite 619
Santa Barbara, CA 93108

[email protected]

Tel: 888-530-6726
Fax:800-645-6950

Nonprofit organization that encourages scientific exchange among scientists and provides pilot grants for promising scientific and clinical research related to human herpesvirus 6 (HHV-6).


Hide and Seek Foundation for Lysosomal Storage Disease Research

6475 East Pacific Coast Highway
Suite 466
Long Beach, CA 90803

[email protected]

Tel: 877-621-1122
Fax:818-762-2502

Nonprofit that raises awareness and supports research to find treatments and cures for lysosomal .


Hope for Hypothalamic Hamartomas (Hope for HH)

P.O. Box 721
Waddell, AZ 85355

[email protected]

Provides information and support to hypothalamic hamartoma (HH) patients, caregivers, and healthcare providers and promotes research toward early detection, improved treatments, living with HH, and a cure.


HopeNET

14425 Coachway Drive
Centreville, VA 20120

[email protected]

Tel: 703-543-8131; 804-754-4455


Human Brain and Spinal Fluid Resource Center

Neurology Research (127A) W. Los Angeles Healthcare Center
11301 Wilshire Blvd. Bldg. 212
Los Angeles, CA 90073

[email protected]

Tel: 310-268-3536
Fax:310-268-4768


Human Growth Foundation

997 Glen Cove Avenue
Suite 5
Glen Head, NY 11545

[email protected]

Tel: 800-451-6434
Fax:516-671-4055

Voluntary, non-profit organization dedicated to helping medical science better understand the process of growth.


Hunter’s Hope Foundation[A Leukodystrophy Resource]

P.O. Box 643
Orchard Park, NY 14127

[email protected]

Tel: 716-667-1200; 877-984-HOPE (4673)
Fax:716-667-1212

Fosters awareness about Krabbe disease and other leukodystrophies, works to promote early detection through newborn screening, provides information and service linkages to families, and funds research efforts to identify new treatments and therapies, and ultimately, a cure.


Huntington’s Disease Society of America

505 Eighth Avenue
Suite 902
New York, NY 10018

[email protected]

Tel: 212-242-1968; 800-345-HDSA (4372)
Fax:212-239-3430

Dedicated to finding a cure for Huntington’s Disease while providing support and services for those with HD and their families.


Hydrocephalus Association

4340 East West Highway
Suite 905
Bethesda, MD 20814

[email protected]

Tel: 301-202-3811; 888-598-3789
Fax:301-202-3813

Non-profit association that provides support, education, and advocacy programs for families and professionals and is the largest private funder of hydrocephalus research in the United States.


Hypersomnia Foundation

5885 Cumming Highway
Suite 108-255
Sugar Hill, GA 30518

Tel: 844-342-4701

The Hypersomnia Foundation strives to improve the lives of people with hypersomnia by advocating on their behalf, providing support, educating the public and healthcare professionals, raising awareness, and  research into effective treatments, better diagnostic tools, and, ultimately, a cure for these debilitating conditions.


Independent Living Research Utilization (ILRU)

TIRR Memorial hermann Research Hospital
1233 Moursund
Houston, TX 77030

[email protected]

Tel: 713-520-0232; 713-520-5136 (TTY)
Fax:713-520-5785

National center for information, training, research, and technical assistance in independent living. Works to expand the body of knowledge on independent living and to promote utilization of results of research programs and demonstration projects.


International Campaign for Cures of SCI Paralysis

16415 Addison Road
Suite 550
Addison, TX 75001

[email protected]

Tel: 877-SCI-CURE
Fax:972-248-7313

The ICCP is a coalition that consists of member organizations working in their collaborative mission “to expedite the discovery of cures for Spinal Cord Injury Paralysis”. Members include the Christopher Reeve Foundation, PVA, the Kent Waldrep Foundation, the Miami Project, and others. In the financial year 2000 ICCP member groups funded more than 150 research projects worth over US $ 25 million. These projects were funded as a result of the diverse range of traditional fundraising initiatives and include Canadian Neurotrauma programs under the guidance of Rick Hansen Institute ($6 million approx).

International Campaign for Cures of SCI Paralysis (ICCP)


International Dyslexia Association

40 York Road
4th Floor
Baltimore, MD 21204

[email protected]

Tel: 410-296-0232; 800-ABC-D123
Fax:410-321-5069

Promotes effective teaching approaches and related clinical educational intervention strategies for people with dyslexia; supports and encourages interdisciplinary study and research; and facilitates exploration of the causes and early identification of dyslexia. Committed to the responsible and wide dissemination of research-based knowledge.


International Essential Tremor Foundation

P.O. Box 14005
Lenexa, KS 66285-4005

[email protected]

Tel: 913-341-3880; 888-387-3667
Fax:913-341-1296

Provides educational information, funds research in tremor , and offers services and support to individuals diagnosed with essential tremor, their families, and health care providers. Information and support includes a quarterly newsletter, support groups, and physician information and referrals.


International RadioSurgery Association

2960 Green Street
P.O. Box 5186
Harrisburg, PA 17110

[email protected]

Tel: 717-260-9808
Fax:717-260-9809

Proactive patient organization providing information and referrals on Gamma Knife, Linac, and particle beam radiosurgery for brain tumors, arteriovenous malformations (AVMs), and neurological pain and movement .


International Research Foundation for RSD/CRPS

1910 East Busch Boulevard
Tampa, FL 33612

[email protected]

Tel: 813-907-2312
Fax:813-830-7446

Not-for-profit organization dedicated to education and research on RSD/CRPS. Works to establish an international research network to help educate medical professionals and support research worldwide.


International Rett Syndrome Foundation

4600 Devitt Drive
Cincinnati, OH 45246

[email protected]

Tel: 513-874-1298; 800-818-7388

The core mission of the IRSF is to fund research for treatments and a cure for Rett syndrome while enhancing the overall quality of life for those living with Rett syndrome by providing information, programs, and services.


Intracranial Hypertension Research Foundation

6517 Buena Vista Drive
Vancouver, WA 98661

[email protected]

Tel: 360-693-4473
Fax:360-694-7062

International non-profit that sponsors and funds medical research of idiopathic intracranial hypertension (old name pseudotumor cerebri) and secondary intracranial hypertension. IHRF’s mission is to understand why IH happens, and find better treatments while ultimately seeking a cure. IHRF provides a support system, educational resources including patient conferences, and communication tools for patients. For physicians and scientists, IHRF sponsors educational training opportunities. IHRF operates in the IH Registry, a patient database for clinical research, at the Oregon Health & Science University. National 501(c)(3) tax-exempt organizations offer a comprehensive program of information and support services for patients and their families. They may offer patient and professional information and education materials, sponsor meetings and scientific workshops, fund research, and provide referrals to chapters and support groups.


Intractable Childhood Epilepsy Alliance

PO Box 365
6360 Shallowford Road
Lewisville, NC 27023

[email protected]

Tel: 336-946-1570
Fax:336-946-1571

The Intractable Childhood Epilepsy Alliance is a non-profit 501c3 organization dedicated to improving lives of children affected by intractable epilepsy through evidence-based information, advocacy for appropriate medical treatment including compassionate use and Orphan drug products, promotion of drug development, data collection through patient registries, and  of research that will lead to a cure for intractable childhood epilepsies.


Iron  Institute

P.O. Box 675
Taylors, SC 29687

[email protected]

Tel: 888-565-IRON (4766); 864-292-1175
Fax:864-292-1878

National public interest organization that aids in the prevention and treatment of disease caused when iron is out of balance in the human body. Offers a number of education, awareness, advocacy and research programs.


ISMRD-International Advocate For Glycoprotein Storage Diseases

20880 Canyon View Drive
Saratoga, CA 95070

[email protected]

Tel: 734-449-1190
Fax:734-449-9038

ISMRD-International Advocate For Glycoprotein Storage Diseases advocates for families worldwide affected by Glycoprotein & Related Storage Diseases by building partnerships with medicine, science and industry and by providing a network of support and information.


Jain Foundation

9725 Third Avenue NE
Suite 204
Seattle, WA 98115

[email protected]; [email protected]

Tel: 425-882-1440
Fax:425-658-1703

The Jain Foundation seeks to expedite development of a cure or therapy for Limb-girdle muscular dystrophy type 2B (LGMD2B) and Miyoshi Myopathy. In addition to educating physicians and patients about LBMD2B/Myoshi, the Foundation maintains a patient registry, offers help with diagnosis (e.g.,  dysferlin gene mutational analysis), funds and monitors research and progress, provides financial support to accelerate clinical trials, and encourages scientific collaboration.


Joe Niekro Foundation

12707 High Bluff Drive, Suite 200
San Diego, CA 92130-2035

[email protected]

Tel: 877-803-7650


Joubert Syndrome Foundation & Related Cerebellar

1415 West Avenue
Cincinnati, OH 45215

[email protected]

Tel: 614-864-1362

Non-profit organization that offers information and support to families worldwide. Sponsors a conference, publishes a quarterly newsletter, and works to increase public awareness.


Juvenile Diabetes Research Foundation, International

26 Broadway
14th Floor
New York, NY 10004

[email protected]

Tel: 800-533-CURE (2873); 212-785-9500
Fax:212-795-9595

International non-profit that works to find a cure for diabetes and its complications through the support of research.


Katie’s Kids for the Cure/ National Fund for Pediatric Brain Tumor Research

3741 Walnut Street
Box 612

Philadelphia, PA 19104

[email protected]

Tel: 877-KTS-KIDS (587-5437); 610-831-9026
Fax:215-689-1454

Funds innovative and creative brain tumor research, both clinical and basic science.


Kennedy’s Disease Association

P.O. Box 1105
Coarsegold, CA 93614-1105

[email protected]

Tel: 855-532-7762

Non-profit resource that offers support and information about spinal bulbar muscular atrophy or Kennedy’s Disease. Works to increase awareness and to raise funds in support of research. Sponsors support groups.


Learning Disabilities Association of America

4156 Library Road
Suite 1
Pittsburgh, PA 15234-1349

[email protected]

Tel: 412-341-1515
Fax:412-344-0224

Dedicated to identifying causes and promoting prevention of learning disabilities and to enhancing the quality of life for all individuals with learning disabilities and their families by encouraging effective identification and intervention, fostering research, and protecting their rights under the law.


Les Turner ALS Foundation

5550 West Touhy Avenue
Suite 302
Skokie, IL 60077-3254

[email protected]

Tel: 847-679-3311
Fax:847-679-9109

Supports medical research, patient services, and promotes awareness and education to find the cause(s), effective treatments, and ultimately, a cure for amyotrophic lateral sclerosis.


Lewy Body Dementia Association

912 Killian Hill Road, S.W.

Lilburn, GA 30047

[email protected]

Tel: 404-935-6444; 800-539-9767
Fax:480-422-5434

Supports those affected by Lewy body dementias through outreach, education and research.


LGS Foundation

192 Lexington Avenue
Suite 216
New York, NY 10016

[email protected]

Tel: 718-374-3800

LGS Foundation is a not-for- profit organization dedicated to providing information about Lennox-Gastaut Syndrome, a rare and severe form of childhood onset epilepsy, while raising funds for research, programs, and services for individuals living with LGS, and their families.


Lissencephaly Network

10408 Bitterroot Court
Ft. Wayne, IN 46804

[email protected]

Tel: 260-432-4310
Fax:260-432-4310

Non-profit organization that serves children and families affected by lissencephaly and other neuronal migration .


Living Bank

P.O. Box 6725
Houston, TX 77265

[email protected]

Tel: 800-528-2971

Non-profit donor education organization. Maintains computerized records of donor data for future retrieval during emergencies.


Lowe Syndrome Association

P.O. Box 864346
Plano, TX 75086

[email protected]

Tel: 972-733-1338

Provides information, fosters communication among families, and supports medical research on Lowe syndrome. Activities include conferences, a research grant program, a newsletter and other publications.


Lupus Foundation of America

2000 L Street, N.W.
Suite 710
Washington, DC 20036

[email protected]

Tel: 202-349-1155; 800-558-0121
Fax:202-349-1156

Nonprofit voluntary health organization working to improve the diagnosis and treatment of lupus, support individuals and families affected by the disease, increase awareness of lupus among health professionals and the public, and find the causes and cure of lupus.


Lupus Research Institute

330 Seventh Avenue
Suite 1701
New York, NY 10001

[email protected]

Tel: 212-812-9881


Lymphoma Research Foundation

8800 Venice Blvd.
Suite 207
Los Angeles, CA 90034

[email protected]

Tel: 800-500-9976; 310-204-7040
Fax:310-204-7043

Offers up-to-date information, support, and education programs to patients, caregivers, and professionals, including printed materials, conferences and symposiums, webcasts, and teleconferences. Other services include a nationwide Lymphoma Support Network peer support program, Helpline and Clinical Trials Information Service and limited financial assistance. Funds lymphoma research.


MAAP Services for Autism, Asperger Syndrome, and PDD

P.O. Box 524
Crown Point, IN 46308

[email protected]


Magic Foundation [Growth ]

6645 West North Avenue
Oak Park, IL 60302

Tel: 708-383-0808; 800-3-MAGIC3 (362-4423)
Fax:708-383-0899

National nonprofit organization dedicated to helping children whose physical growth is affected by a medical problem.


Make-A-Wish Foundation of America

4742 N. 24th Street
Suite 400
Phoenix, AZ 85016

[email protected]

Tel: 800-722-WISH (9474); 602-279-WISH (9474)
Fax:602-279-0855

Foundation that grants the wishes of children with life-threatening illnesses.


March of Dimes

1275 Mamaroneck Avenue
White Plains, NY 10605

[email protected]

Tel: 914-997-4488; 888-MODIMES (663-4637)
Fax:914-428-8203

Works to improve the health of babies by preventing birth defects and infant mortality through programs of research, community services, education, and advocacy.


Mayday Fund [For Pain Research]

c/o SPG
136 West 21st Street, 6th Floor
New York, NY 10011

[email protected]

Tel: 212-366-6970
Fax:212-366-6979

The Mayday Pain Project works to increase awareness and to provide objective information concerning the treatment of pain.


Meningitis Foundation of America, Inc.

P.O. Box 1818
El Mirage, AZ 85335

[email protected]

Tel: 480-270-2652

Helps support patients with meningitis and their families. Provides information to educate the public and medical professionals about meningitis about early diagnosis and treatment. Also works for the development of vaccines and other means of treating and/or preventing meningitis.


Miami Project to Cure Paralysis

P.O. Box 016960
R-48
Miami, FL 33101-6960

[email protected]

Tel: 305-243-6001; 800-STANDUP (782-6387)
Fax:305-243-6017

Supports and conducts research and related programs in the area of spinal cord injury.


Michael J. Fox Foundation for Parkinson’s Research

Grand Central Station
P.O. Box 4777
New York, NY 10163

Tel: 212-509-0995

Dedicated to advancing a cure for Parkinson’s disease by identifying promising research and raising funds for research support.


Migraine Research Foundation

300 East 75th Street
Suite 3K
New York, NY 10021

[email protected]

Tel: 212-249-5402
Fax:212-249-5405

Assists migraine sufferers by providing information and support and by raising money to fund innovative research into its causes and better treatments.


MitoAction

P.O. Box 51474
Boston, MA 02205

[email protected]

Tel: 888-648-6228

Works to improve quality of life for adults and children affected by mitochondrial disease and to raise awareness about mitochondrial  and their relationship to other diseases.


MLD Foundation

21345 Miles Drive
West Linn, OR 97068

[email protected]

Tel: 800-617-8387; 503-656-4808


Moebius Syndrome Foundation

P.O. Box 147
Pilot Grove, MO 65276

[email protected]

Tel: 660-834-3406

Non-profit organization that provides individuals and families with a support network; promotes public and professional education about the disorder, and promotes and funds research.


Mucolipidosis IV (ML4) Foundation

3500 Piedmont Road, Suite 500
Atlanta, GA 30305

[email protected]

Tel: 877-ML4-5459 (654-5459)

Funds, promotes, and supports medical research dedicated to developing treatments and a cure for ML4, which causes mental retardation, motor delays, retinal degeneration, and limited lifespan.


Multiple Sclerosis Association of America

375 Kings Highway North
Cherry Hill, NJ 08034

[email protected]

Tel: 856-488-4500; 800-532-7667
Fax:856-661-9797

National, non-profit organization dedicated to enhancing the quality of life for those affected by multiple sclerosis. MSAA provides ongoing support and direct services to individuals with MS and their families and works to promote a greater understanding of the needs and challenges of those who face physical obstacles.


Multiple Sclerosis Foundation

6520 North Andrews Avenue
Ft. Lauderdale, FL 33309-2130

[email protected]

Tel: 954-776-6805; 888-MSFOCUS (673-6287)
Fax:954-351-0630

Dedicated to helping people with MS, the Multiple Sclerosis Foundation offers a wide array of free services including: national toll-free support, educational programs, homecare services, support groups, assistive technology programs, publications, a comprehensive website, and more programs to improve the quality of life for those affected by MS.


MUMS National Parent-to-Parent Network[For Parents of Children With Disabilities]

150 Custer Court
Green Bay, WI 54301-1243

[email protected]

Tel: 920-336-5333; 877-336-5333 (Parents only)
Fax:920-339-0995

Provides support to parents in the form of a networking system that matches them with other parents whose children have the same or similar condition.


Muscular Dystrophy Association

National Office – 222 S. Riverside Plaza
Suite 1500
Chicago, IL 60606

[email protected]

Tel: 800-572-1717
Fax:520-529-5300

Voluntary health agency that fosters neuromuscular disease research and provides patient care funded almost entirely by individual private contributors. MDA addresses the muscular dystrophies, spinal muscular atrophy, ALS, Charcot-Marie-Tooth disease, myasthenia gravis, Friedreich’s ataxia, metabolic diseases of muscle, and inflammatory diseases of muscle, for a total of more than 40 neuromuscular diseases.


Muscular Dystrophy Family Fund

1033 Third Avenue SW
Suite 108
Carmel, IN 46032

[email protected]

Tel: 317-249-8488
Fax:317-615-9140

Provides services, resources, adaptive equipment, and home medical equipment to individuals with muscular dystrophy and their families to improve independence and quality of life. Focuses on meeting the day-to-day needs of individuals and families.


Musella Foundation for Brain Tumor Researchand Information

1100 Peninsula Blvd.
Hewlett, NY 11557

[email protected]

Tel: 516-295-4740; 888-295-4740
Fax:516-295-2870

Non-profit organization dedicated to improving the quality of life and survival times for brain tumor patients by providing information to patients and their families and raising money for brain tumor research.


Myasthenia Gravis Foundation of America, Inc.

355 Lexington Avenue
15th Floor
New York, NY 10017-6603

[email protected]

Tel: 800-541-5454; 212-297-2156
Fax:212-370-9047

Works to facilitate the timely diagnosis and optimal care of individuals affected by myasthenia gravis and closely related  and to improve their lives through programs of patient services, public information, medical research, professional education, advocacy, and patient care.


Myelin Project

P.O. Box 39
Pacific Palisades, CA 90272

[email protected]

Tel: 800-869-3546; 310-459-1071
Fax:310-230-4298

Aims to accelerate research on repair of myelin, the white matter insulating the nerves, which can be destroyed by hereditary metabolic , such as the leukodystrophies, and acquired , such as multiple sclerosis.


Myelin Repair Foundation

18809 Cox Avenue
Suite 190
Saratoga, CA 95070

[email protected]

Tel: 408-871-2410

Focused on accelerating the discovery and development of myelin repair therapeutics for multiple sclerosis to globally impact the way medical science is conducted by shortening the time to market for new medicines for patients.


Myositis Association

1737 King Street
Suite 600
Alexandria, VA 22314

[email protected]

Tel: 703-299-4850; 800-821-7356
Fax:703-535-6752

Works to improve the lives of those affected by inflammatory myopathies. Seeks out persons with inflammatory myopathies, provides a support network, acts as a resource for patients and the medical community, advocates for patients, and promotes research into the causes and treatment of the .


Myotonic Dystrophy Foundation

1004 O’Reilly Avenue
San Francisco, CA 94129

[email protected]

Tel: 86-MYOTONIC; 415-800-7777

The Myotonic Dystrophy Foundation (MDF) is the world’s largest patient organization focused solely on myotonic dystrophy. Their mission, “Care and a Cure,” is to enhance the quality of life of people living with myotonic dystrophy, and advance research focused on treatments and a cure.


Narcolepsy Network, Inc.

46 Union Drive, #A212
North Kingstown, RI 02852

[email protected]

Tel: 888-292-6522; 401-667-2523
Fax:401-633-6567

National, non-profit organization that sponsors education, awareness, and support programs.


National ALS Registry

4770 Buford Hwy NE
Atlanta, GA 30341

Tel: 800-232-4636

The National ALS Registry is a program to collect, manage, and analyze data about people with ALS in the United States. Developed by the Center for Disease Control and Prevention’s Agency for Toxic Substances and Disease Registry (ATSDR), this registry establishes information about the number of ALS cases, collects demographic, occupational and environmental exposure data from people with ALS to learn about potential risk factors for the disease, and notifies participants about research opportunities. The Registry includes data from national databases as well as de-identified information provided by individuals with ALS. All information is kept confidential. People with ALS can add their information to the Registry by visiting www.cdc.gov/als.


National Aphasia Association

P.O. Box 87
Scarsdale, NY 10583

[email protected]

Tel: 212-267-2814; 800-922-4NAA (4622)
Fax:212-267-2812

Promotes the care, welfare, and rehabilitation of people with aphasia through public education and support of research. Offers printed materials, a toll-free information hotline, a newsletter, and a listing of support groups.


National Association of Hospital Hospitality Houses

P.O. Box 1439
Gresham, OR 97030-4271

[email protected]

Tel: 800-542-9730; 503-328-9294
Fax:828-253-8082

Non-profit corporation serving facilities that provide lodging and other supportive services to patients and their families when confronted with medical emergencies.


National Ataxia Foundation (NAF)

600 Highway 169 South
Suite 1725
Minneapolis, MN 55426

[email protected]

Tel: 763-553-0020
Fax:763-553-0167

Encourages and supports research into the hereditary ataxias, a group of chronic and progressive neurological  affecting coordination. Sponsors chapters and support groups throughout the U.S.A. and Canada. Publishes a quarterly newsletter and educational literature on the various forms of ataxia.


National Brain Tumor Society

55 Chapel Street
Suite 200
Newton, MA 02458

[email protected]

Tel: 866-455-3214
Fax:617-924-9998

Nonprofit organization committed to finding a cure for brain tumors; its mission is to aggressively drive strategic research, advocate for public policies that meet the critical needs of the brain tumor community, and provide trusted patient information.


National Cancer Institute (NCI)

National Institutes of Health, DHHS
6116 Executive Boulevard, Ste. 3036A, MSC 8322
Bethesda, MD 20892-8322

[email protected]

Tel: 800-4-CANCER (422-6237); 800-332-8615 (TTY)


National Center for Health Statistics (NCHS)

Centers for Disease Control and Prevention, DHHS
Division of Data Services, 3311 Toledo Road
Hyattsville, MD 20782

[email protected]

Tel: 301-458-4636; 866-441-NCHS (6247)


National Center for Learning Disabilities

32 Laight Street
Second Floor
New York, NY 10013

[email protected]

Tel: 212-545-7510; 888-575-7373
Fax:212-545-9665

Provides information to parents, professionals and individuals with learning disabilities, promotes research and programs to foster learning, and advocates for policies to protect and strengthen educational rights and opportunities.


National Center for Parents with Disabilities and their Families/Through the Looking Glass

3075 Adeline St.
Suite 120
Berkeley, CA 94703

[email protected]

Tel: 800-644-2666; 510-848-1112
Fax:510-848-4445

Non-profit agency that provides services, information and referrals, consultation, training, materials, and research programs concerning families in which a parent, grandparent, or child has a disability or medical issue.


National Council on Disability

1331 F Street, N.W.
Suite 850
Washington, DC 20004

[email protected]

Tel: 202-272-2004; 202-272-2074 (TTY)
Fax:202-272-2022


National Council on Patient Information and Education

200-A Monroe Street
Suite 212
Rockville, MD 20850

[email protected]

Tel: 301-340-3940
Fax:301-340-3944

Coalition of nearly 150 organizations committed to safer, more effective medicine use through better communication. Additional website is www.bemedwise.org.


National Disease Research Interchange

1628 JFK Blvd.
8 Penn Cntr. 8th Floor
Philadelphia, PA 19103

[email protected]

Tel: 215-557-7361; 800-222-NDRI (6374)
Fax:215-557-7154

Non-profit organization engaged in the procurement and distribution of human tissues and organs for biomedical researchers.


National Dissemination Center for Children with Disabilities

U.S. Dept. of Education, Office of Special Education Programs
1825 Connecticut Avenue NW, Suite 700
Washington, DC 20009

[email protected]

Tel: 800-695-0285; 202-884-8200
Fax:202-884-8441


National Down Syndrome Society

666 Broadway
New York, NY 10012-2317

[email protected]

Tel: 212-460-9330; 800-221-4602
Fax:212-979-2873

The mission of the National Down Syndrome Society is to be the national advocate for the value, acceptance and inclusion of people with Down syndrome.


National Dysautonomia Research Foundation

P.O. Box 301
Red Wing, MN 55066-0301

[email protected]

Tel: 651-327-0367
Fax:651-267-0524

Non-profit foundation established to help those afflicted with any of the various forms of dysautonomia. Provides a support network for affected individuals and family members by providing information on the various forms of dysautonomia, as well as providing contacts to other organizations that may be of assistance.


National Eye Institute (NEI)

National Institutes of Health, DHHS
31 Center Drive, Rm. 6A32 MSC 2510
Bethesda, MD 20892-2510

[email protected]

Tel: 301-496-5248


National Fabry Disease Foundation

4301 Connecticut Avenue, NW
Suite 404
Washington, DC 20008-2369

[email protected]

Tel: 800-651-9131
Fax:800-651-9135


National Fibromyalgia Association

1000 Bristol Street
Suite 17-247
Newport Beach, CA 92260

[email protected]
Fax:714-921-6920

Non-profit organization whose mission is to develop and execute programs dedicated to improving the quality of life for people with fibromyalgia by increasing the awareness of the public, media, government and medical communities.


National Fibromyalgia Partnership, Inc.

140 Zinn Way
Linden, VA 22642-5609

[email protected]

Tel: 866-725-4404
Fax:866-782-8528

Non-profit, membership organization, comprised of patients and medical professionals, which offers information on fibromyalgia, including the journal Fibromyalgia Frontiers.


National Fibromyalgia Research Association

P.O. Box 500
Salem, OR 97308

[email protected]

Non-profit organization dedicated to raising public awareness, education, and scientific research on fibromyalgia and to advancing treatments and a cure.


National Foundation for the Treatment of Pain

P.O. Box 70045
Houston, TX 77270

[email protected]

Tel: 713-862-9332
Fax:713-862-9346

Not-for-profit organization dedicated to providing support for patients who are suffering from intractable pain, their families, friends and the physicians who treat them. Offers a patient forum, advocacy programs, information, support resources, and direct medical intervention.


National Fragile X Foundation

2100 M Street, N.W.
Suite 170, Box 302
Washington, DC 20087

[email protected]

Tel: 800-688-8765
Fax:925-938-9315

Provides support, education, awareness, research, and legislative advocacy for all Fragile X-associated  including fragile X syndrome (FXS), fragile X-associated tremor/ataxia syndrome (FXTAS), and fragile X-associated primary ovarian insufficiency (FXPOI).


National Gaucher Foundation, Inc.

5410 Edson Lane, Suite 220
Rockville, MD 20852

[email protected]

Tel: 800-504-3189
Fax:770-934-2911

Funds research for a cure and alternative treatments for Gaucher Disease; provides education, financial, support and mentor programs and advocates for legislation affecting the Gaucher and rare disease community.


National Headache Foundation

820 N. Orleans
Suite 411
Chicago, IL 60610-3132

[email protected]

Tel: 312-274-2650; 888-NHF-5552 (643-5552)
Fax:312-640-9049

Non-profit organization dedicated to service headache sufferers, their families, and the healthcare practitioners who treat them. Promotes research into headache causes and treatments and educates the public.


National Health Council

1730 M Street, NW
Suite 500
Washington, DC 20036-3910

[email protected]

Tel: 202-785-3910
Fax:202-785-5923

Association of voluntary health agencies, businesses, and not-for-profit organizations. Sponsors awareness campaigns to promote the health of all people and to advance medical research and the voluntary health movement.


National Health Information Center (NHIC)

U.S. Department of Health and Human Services
P.O. Box 1133
Washington, DC 20013-1133

[email protected]

Tel: 301-565-4167; 800-336-4797
Fax:301-984-4256


National Heart, Lung, and Blood Institute (NHLBI)

National Institutes of Health, DHHS
31 Center Drive, Rm. 4A21 MSC 2480
Bethesda, MD 20892-2480

Tel: 301-592-8573; 240-629-3255 (TTY); Recorded Info: 800-575-WELL (9355)


National Heart, Lung, and Blood InstituteHealth Information Center

P.O. Box 30105
Bethesda, MD 20824-0105

[email protected]

Tel: 301-592-8573; 240-629-3255 (TTY); Recorded Info: 800-575-WELL (9355)


National Hospice and Palliative Care Organization/Natl. Hospice Foundation

1731 King Street
Alexandria, VA 22314

[email protected]

Tel: 703-837-1500; Helpline: 800-658-8898
Fax:703-837-1233

Non-profit membership organization representing hospice and palliative care programs and professionals. Provides free referrals to the public for hospice listings across the United States and internationally. Distributes free packets of general information describing hospice services and the Medicare Hospice Benefit.


National Human Genome Research Institute (NHGRI)

National Institutes of Health, DHHS
31 Center Drive, Rm. 4B09 MSC 2152
Bethesda, MD 20892-2152

Tel: 301-402-0911


National Institute for Occupational Safety and Health

Centers for Disease Control and Prevention, DHHS
4676 Columbia Parkway, Mail Stop C-13
Cincinnati, OH 45226-1998

[email protected]

Tel: 800-232-4636
Fax:513-533-8573


National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)

National Institutes of Health, DHHS
31 Center Dr., Rm. 4C02 MSC 2350
Bethesda, MD 20892-2350

[email protected]

Tel: 301-496-8190; 877-22-NIAMS (226-4267)


National Institute of Arthritis and Musculoskeletal and Skin Diseases Information Clearinghouse

1 AMS Circle
Bethesda, MD 20892-3675

[email protected]

Tel: 877-22-NIAMS (226-4267); 301-565-2966 (TTY)
Fax:301-718-6366


National Institute of Child Health and Human Development (NICHD)

National Institutes of Health, DHHS
31 Center Drive, Rm. 2A32 MSC 2425
Bethesda, MD 20892-2425

Tel: 301-496-5133Fax: 301-496-7101


National Institute on Deafness and OtherCommunication  Information Clearinghouse

1 Communication Avenue
Bethesda, MD 20892-3456

[email protected]

Tel: 800-241-1044; 800-241-1055 (TTY)


National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR)

Administration for Community Living
330 C St., NW
Washington, DC 20201

Tel: 202-401-4634; 202-245-7316 (TTY)


National Institute on Drug Abuse (NIDA)

National Institutes of Health, DHHS
6001 Executive Blvd., Rm. 5213 MSC 9561
Rockville, MD 20892-9561

Tel: 301-443-1124; 800-729-6686 (Publications)


National Library of Medicine (NLM)

National Institutes of Health, DHHS
8600 Rockville Pike, Bldg. 38, Rm. 2S10
Bethesda, MD 20894

Tel: 301-496-6308; 888-346-3656


National Meningitis Association

P.O. Box 60143
Ft. Myers, FL 33906

[email protected]

Tel: 866-366-3662
Fax:877-703-6096

Non-profit public charity that works to inform families, medical professionals, and others about the dangers of meningococcal meningitis and the benefits of vaccination.


National MPS Society, Inc.

PO Box 14686
Durham, NC 27709-4686

[email protected]

Tel: 877-MPS-1001; 919-806-0101
Fax:919-806-2055

Dedicated to finding cures for mucopolysaccharidosis (MPS) and related diseases. Provides hope and support for affected individuals and their families by sponsoring research, advocacy, and awareness programs.


National Multiple Sclerosis Society

733 Third Avenue
3rd Floor
New York, NY 10017-3288

[email protected]

Tel: 800-FIGHT-MS (800-344-4867)
Fax:212-986-7981

Funds research, helps families stay together, provides accurate and up-to-date information, helps with employment issues, offers free counseling, runs self-help groups, advocates for people with disabilities, and provides referrals to medical professionals.


National NeuroAIDS Tissue Consortium

401 N. Washington Street
Suite 700
Rockville, MD 20850

[email protected]

Tel: 866-668-2272; 301-251-1161 (x186)
Fax:301-576-4597

Provides tissue for AIDS-related research through a banking network of centers.


National Niemann-Pick Disease Foundation, Inc.

P.O. Box 49
401 Madison Avenue, Suite B
Ft. Atkinson, WI 53538

[email protected]

Tel: 920-563-0930; 877-CURE-NPC (287-3672)
Fax:920-563-0931

International nonprofit organization made up of parents, medical and educational professionals, friends, relatives, and others.


National Oral Health Clearinghouse

1 NOHIC Way
Bethesda, MD 20892-3500

[email protected]

Tel: 301-402-7364
Fax:301-480-4098


National Organization for  of the Corpus Callosum

PMB 363
18032-C Lemon Drive
Yorba Linda, CA 92886

[email protected]

Tel: 714-747-0063
Fax:714-693-0808

This organization works to enhance the quality of life and promote opportunities for individuals with  of the corpus callosum and to raise the profile, understanding, and acceptance of these  through research, education, advocacy, and networking.


National Organization for Rare  (NORD)

55 Kenosia Avenue
Danbury, CT 06810

[email protected]

Tel: 203-744-0100; Voice Mail: 800-999-NORD (6673)
Fax:203-798-2291

Federation of voluntary health organizations dedicated to helping people with rare “orphan” diseases and assisting the organizations that serve them. Committed to the identification, treatment, and cure of rare  through programs of education, advocacy, research, and service.


National Organization of Social Security Claimants’ Representatives

560 Sylvan Avenue
Suite 2200
Englewood Cliffs, NJ 07632

[email protected]

Tel: 201-567-4228
Fax:201-567-1542

Association of over 3,300 attorneys and paralegals who represent Social Security and Supplemental Security Income claimants.


National Organization on Disability

77 Water Street
Suite 204
New York, NY 10005

Tel: 646-505-1191

Promotes the full and equal participation of America’s 54 million men, women and children with disabilities in all aspects of life. Works to raise disability awareness and offers information and referrals.


National Parkinson Foundation

200 SE 1st Street
Suite 800
Miami, FL 33137

[email protected]

Tel: 800-473-4636
Fax:305-537-9901

Provides research, patient services, clinical studies, public and professional education, and physician referrals at over 60 locations and through a nationwide network of chapters and support groups.


National Patient Travel Center

c/o Mercy Medical Airlift
4620 Haygood Road, Suite 1
Virginia Beach, VA 23455

[email protected]

Tel: 800-296-1217; 757-318-9174
Fax:757-318-9107


National Prevention Information Network

Centers for Disease Control and Prevention, DHHS
P.O. Box 6003
Rockville, MD 20849-6003

[email protected]

Tel: 301-562-1098; 800-458-5231
Fax:888-282-7681


National Rehabilitation Information Center (NARIC)

8400 Corporate Drive
Suite 500
Landover, MD 20785

[email protected]

Tel: 301-459-5900; 800-346-2742; 301-459-5984 (TTY)
Fax:301-562-2401


National Respite Network and Resource Center

800 Eastowne Drive
Suite 105
Chapel Hill, NC 27514

Tel: 919-490-5577 (x222)
Fax:919-490-4905

Information and referral service that assists and promotes the development of quality respite and crisis care programs; helps families locate respite and crisis care services in their communities; and sponsors advocacy and awareness efforts concerning respite care.


National Reye’s Syndrome Foundation

P.O. Box 829
426 North Lewis
Bryan, OH 43506-0829

[email protected]

Tel: 419-636-2679; 800-233-7393
Fax:419-636-9897

Provides public education, medical information, research , and supportive services for victims of Reye’s Syndrome, an often-fatal disease associated with aspirin which affects all ages.


National Shingles Foundation[For Research on Varicella Zoster]

603 W. 115 Street
Suite 371
New York, NY 10025

[email protected]

Tel: 212-222-3390
Fax:212-838-0380

Non-profit organization solely combating VZV infections: chickenpox, shingles and post-herpetic neurgalia (PHN). Supports research that may lead to a better understanding of VZV infections and to advances in their prevention, treatment and cure.


National Sleep Foundation

1010 N. Glebe Road
Suite 420
Arlington, VA 22201

[email protected]

Tel: 703-243-1697
Fax:202-347-3472

National nonprofit organization that works to improve public health and safety by promoting public understanding of sleep and sleep . Supports sleep-related education, research, and advocacy; produces and distributes educational materials to the public and healthcare professionals; and offers postdoctoral fellowships and grants for sleep researchers.


National Spasmodic Dysphonia Association

300 Park Boulevard
Suite 415
Itasca, IL 60143

[email protected]

Tel: 800-795-NSDA (6732)
Fax:630-250-4505

Works to advance medical research into the causes of and treatments for spasmodic dysphonia; promotes physician and public awareness of the disorder; and sponsors support groups for patients and their families.


National Spasmodic Torticollis Association

9920 Talbert Avenue
Fountain Valley, CA 92708

[email protected]

Tel: 714-378-9837; 800-487-8385

Non-profit organization formed to give information and support to people with spasmodic torticollis (ST), also known as cervical dystonia. Offers an outreach program designed to increase awareness of the disorder. Chapters are located nationwide.


National Stroke Association

9707 East Easter Lane
Suite B
Centennial, CO 80112-3747

[email protected]

Tel: 303-649-9299; 800-STROKES (787-6537)
Fax:303-649-1328

National non-profit organization that offers education, services and community-based activities in prevention, treatment, rehabilitation and recovery. Serves the public and professional communities, people at risk, patients and their health care providers, stroke survivors, and their families and caregivers.


National Tay-Sachs and Allied Diseases Association

2001 Beacon Street
Suite 204
Boston, MA 02135

[email protected]

Tel: 800-90-NTSAD (906-8723)
Fax:617-277-0134

The mission of the National Tay-Sachs & Allied Diseases Association is to lead the fight to treat and cure Tay-Sachs, Canavan and related genetic diseases and to support affected families and individuals in leading fuller lives.


National Vaccine Injury Compensation Program

Health Resources and Services Administration, DHHS
Parklawn Bldg., 5600 Fishers Lane
Rockville, MD 20857

Tel: 301-443-6593; 800-338-2382


National Vulvodynia Association

P.O. Box 4491
Silver Spring, MD 20914-4491

[email protected]

Tel: 301-299-0775
Fax:301-299-3999

Non-profit organization created in 1994 to improve the lives of individuals affected by vulvodynia, a spectrum of chronic vulvar pain .


NBIA  Association

2082 Monaco Court
El Cajon, CA 92019-4235

[email protected]

Tel: 619-588-2315
Fax:619-588-4093

Dedicated to providing assistance to families affected by neurodegeneration with brain iron accumulation (formerly called Hallervorden-Spatz Syndrome) through support for research and educating the public.


Neurofibromatosis Network

213 S. Wheaton Avenue
Wheaton, IL 60187

[email protected]

Tel: 630-510-1115; 800-942-6825

Non-profit organization made up of independent state and regional chapters that provide support and services to NF families. Provides patient/family and public education, supports research, publishes a newsletter, and sponsors meetings and chapters nationwide.


Nevus Outreach, Inc

600 SE Delaware Ave
Suite 200
Bartlesville, OK 74

[email protected]

Tel: 877-426-3887; 918-331-0595
Fax:281-417-4020

Nevus Outreach is dedicated to: improving awareness and providing support for people affected by congenital pigmented nevi, and finding a cure.


NIAID Office of Communications and Government Relations

National Institutes of Health, DHHS
5601 Fishers Lane, MSC 9806
Bethesda, MD 20892

Tel: 301-496-5717


Occupational Safety & Health Administration

U.S. Department of Labor
200 Constitution Avenue, NW
Washington, DC 20210

Tel: 800-321-OSHA (6742)


Office of Clinical Center Communications

National Institutes of Health, DHHS
6100 Executive Blvd., Room 3C01
Bethesda, MD 20892-7511

[email protected]

Tel: 301-496-2563


Office of Disability Employment Policy

U.S. Department of Labor
Perkins Bldg., 200 Constitution Avenue, NW
Washington, DC 20210

Tel: 866-ODEP-DOL (633-7365); 877-889-5627 (TTY)

Office of Rare Disease Research

National Institutes of Health, DHHS
6100 Executive Blvd., Rm. 3A07, MSC 7518
Bethesda, MD 20892-7158

Tel: 301-402-4336

Opsoclonus Myoclonus Support Network, Inc.

2116 Casa Linda Dr.
West Covina, CA 91791

Tel: 626-315-8125

Serves as a resource center for opsoclonus myoclonus patients and health professionals, including physicians and researchers, and helps patients and their families to network with others affected by the syndrome. Any person affected by the syndrome is considered a community member.


Paralyzed Veterans of America (PVA)

801 18th Street, NW
Washington, DC 20006-3517

[email protected]

Tel: 202-USA-1300 (872-1300); 800-555-9140
Fax:202-785-4452

Non-profit organization dedicated to serving the needs of its members—more than 19,000 veterans paralyzed by spinal cord injury or disease, as well as caregivers and others affected by these disabilities—through advocacy, education, and research programs.


Parent Project Muscular Dystrophy (PPMD)

401 Hackensack Avenue, 9th Floor
Hackensack, NJ 07601

[email protected]

Tel: 800-714-KIDS (5437)
Fax:201-944-9987

Dedicated to ending Duchenne — to accelerate research, advocate, demand optimal care for all young men, and educate the global community.


Parkinson Alliance

P.O. Box 308
Kingston, NJ 08528-0308

Tel: 609-688-0870; 800-579-8440
Fax:609-688-0875

Raises and distributes money for the most promising research leading to a cure for Parkinson’s disease. Partners with the Tuchman Foundation to ensure that every dollar donated by individuals and all net proceeds of events go directly to research. The Alliance is also devoted to improving quality of life within the DBS-STN community through an affiliated resource, www.DBS-STN.org.


Parkinson’s Disease Foundation (PDF)

1359 Broadway
Suite 1509
New York, NY 10018

[email protected]

Tel: 212-923-4700; 800-457-6676
Fax:212-923-4778

National nonprofit organization that supports Parkinson’s disease research, education, and public advocacy programs.


Parkinson’s Resource Organization

74-090 El Paseo, Suite 104
Palm Desert, CA 92260

[email protected]

Tel: 760-773-5628; 877-775-4111; 877-775-4111
Fax:760-773-9803

Helps families affected by Parkinson’s by offering emotional and educational support programs, publishing a monthly newsletter about quality of life and family issues, providing information and referral services, promoting advocacy and public awareness, and providing respite for family caregivers.


Partnership for Prescription Assistance

1100 15th Street, NW
Washington, DC 20005

Works to increase awareness of and enrollment in patient assistance programs. Sponsors a toll-free helpline and serves as a single point of access to nearly 500 prescription assistance programs.


Pathways.org

150 N. Michigan Avenue
Suite 2100
Chicago, IL 60601

[email protected]

Tel: 800-955-CHILD (2445)
Fax:312-893-6621

National non-profit organization trusted to assure the best for all babies’ physical development by raising awareness about the gift of early detection, the promise of early therapy, and the benefits of tummy time. Trusted to assure the best for all babies physical development.


Patient Advocate Foundation

421 Butler Farm Road
Hampton, VA 23666

[email protected]

Tel: 800-532-5274
Fax:757-873-8999

National non-profit organization that serves as an active liaison between the patient and their insurer, employer and/or creditors to resolve insurance, job retention and/or debt crisis matters relative to their diagnosis through case managers, doctors and attorneys. Patient Advocate Foundation seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment and preservation of their financial stability.


Patient Recruitment and Public Liaison Office

National Institutes of Health, DHHS
Bldg. 61, #10 Cloister Court
Bethesda, MD 20892-4754

[email protected]

Tel: 800-411-1222; 866-411-1010 (TTY)


Pediatric Brain Foundation (formerly Children’s Neurobiological Solutions)

2144 E. Republic Road
Building B, Suite 202

Springfield, MO 65804

[email protected]

Tel: (417)887-4242

Facilitates science for and educates parents of children with neurological conditions, as well as educating public officials on the critical importance of  pediatric neurological research


Pediatric Brain Tumor Foundation

302 Ridgefield Court
Asheville, NC 28806

[email protected]

Tel: 828-665-6891; 800-253-6530
Fax:828-665-6894

The world’s largest non-governmental funder of childhood brain tumor research. Also offers free educational information, Internet conferences, college scholarships, and other support.


Pediatric Hydrocephalus Foundation

10 Main Street, Suite 335
Woodbridge, NJ 07095

[email protected]

Tel: 732-634-1283

National all-volunteer organization dedicated to  a cure for hydrocephalus, educating and raising awareness about the condition and offering support to the hydrocephalus community.


Pediatric Neurotransmitter Disease Association

P.O. Box 180622
28 Prescott
Old Bethpage, NY 11804

[email protected]
Fax:same

Dedicated to helping the children and families who are affected by a pediatric neurotransmitter diseases through education, advocacy, and research. Diseases presently represented include Tyrosine Hydroxylase Deficiency, Aromatic L Amino Acid Decarboxylase Deficiency, GTP I Cyclohydrolase I Deficiency, and Succinic Semialdehyde Dehydrogenase Dificiency.


People Against Childhood Epilepsy (PACE)

7 East 85th Street
Suite A3
New York, NY 10028

[email protected]

Tel: 212-665-PACE (7223)
Fax:212-327-3075

[In 2011 Susan and Scott Fahey announced that ” PACE will close its doors.”] The Nonprofit was established as a research resource providing information and support to families of children with epilepsy.


Pituitary Network Association

P.O. Box 1958
Thousand Oaks, CA 91358

[email protected]

Tel: 805-499-9973
Fax:805-480-0633

International non-profit organization for patients with pituitary , their families, loved ones, and the physicians and health care providers who treat them.


PMD Foundation (Pelizaeus-Merzbacher disease)

1 Greentree Center
1000 Lincoln Drive East, suite 201
Marlton, NJ 08053

[email protected]

Tel: 609-443-9623

Tax-exempt, nonprofit organization that serves families, researchers, and others affected by Pelizaeus-Merzbacher disease by supporting education, research, services, and advocacy programs.


Post-Polio Health International

4207 Lindell Blvd.
#110
St. Louis, MO 63108-2930

[email protected]

Tel: 314-534-0475
Fax:314-534-5070

Works to enhance the lives and independence of polio survivors and ventilator users through education, advocacy, research, and networking programs.


Prader-Willi Syndrome Association

8588 Potter Park Drive
Suite 500
Sarasota, FL 34238

[email protected]

Tel: 941-312-0400; 800-926-4797
Fax:941-312-0142

Serves as an international vehicle of communication about Prader-Willi syndrome (PWS), a genetically based developmental disability. Provides to parents and professionals a national and international network of information, support services, and research endeavors to meet the needs of affected children and adults and their families.

Preuss Foundation, Inc.[For Brain Tumor Research]

2223 Avenida de la Playa
Suite 220
La Jolla, CA 92037

[email protected]

Tel: 858-454-0200
Fax:858-454-4449

Provides forums for basic brain tumor researchers in an effort to increase communication and collaboration among them.


Prize4Life

P.O. Box 5755
Berkeley, CA 94705

[email protected]

Tel: 617-545-4882


Project ALS

801 Riverside Drive, Suite 6G
Suite 420
New York, NY 10032

[email protected]

Tel: 212-420-7382; 855-900-2257
Fax:212-420-7387

Not-for-profit organization that raises awareness and significant funds toward effective treatments and a cure for ALS, also known as Lou Gehrig’s disease.


Pseudotumor Cerebri Support Network

8247 Riverside Drive
Powell, OH 43065

[email protected]

Non-profit organization that offers information and resources about PTC to people with the disorder.


Purine Research Society

5424 Beech Avenue
Bethesda, MD 20814-1730

[email protected]

Tel: 301-530-0354
Fax:301-564-1180.

National nonprofit organization that supports DNA research and the search for mutations in nuclear and mitochondrial DNA that might cause autistic symptoms or autistic/epileptic symptoms in patients. Offers publications and reference information, including a purine-restricted diet.


RE Children’s Project

79 Christie Hill Road
Darien, CT 06820

[email protected]

Tel: 917-971-2977

National organization devoted to increase awareness regarding Rasmussen’s encephalitis (RE) for the primary purpose of supporting scientific research directed towards a cure.


Reaching for the Stars

3000 Old Alabama Road
Suite 119 – 300
Alpharetta, GA 30022

[email protected]

Tel: 855-240-7387


Reflex Sympathetic Dystrophy Syndrome Association(RSDSA)

P.O. Box 502
99 Cherry Street
Milford, CT 06460

[email protected]

Tel: 203-877-3790; 877-662-7737
Fax:203-882-8362

National not-for-profit organization that promotes greater public and professional awareness of RSD, a painful neurological syndrome. Raises funds for research and educates patients, their families and friends, insurance and healthcare providers, professionals, and the public.


Rehabilitation International

1 Liberty Plaza
Office 2542
New York, NY 10006

[email protected]

Tel: 212-420-1500
Fax:212-505-0871

Global network of people with disabilities, service providers, researchers, government agencies, and advocates promoting and implementing the rights, inclusion, and rehabilitation of people with disabilities.


Research!America

1101 King Street
Suite 520
Alexandria, VA 22314-2960

[email protected]

Tel: 703-739-2577
Fax:703-739-2372

Research!America is the nation’s largest 501(c)(3) public education and advocacy alliance working to make research to improve health a higher national priority. Founded in 1989, Research!America is supported by 400 member institutions, businesses and organizations that together represent the voices of more than 125 million Americans. Our public opinion polls, advocacy programs and publications reach the public and decision makers to help advance medical, health and scientific research.


Resources for Rehabilitation

22 Bonad Road
Winchester, MA 01890

[email protected]

Tel: 781-368-9094
Fax:781-368-9096

Resource for information, publications, and training programs that enable people with disabilities and chronic conditions to remain independent.


Restless Legs Syndrome Foundation

3006 Bee Caves Road
Suite D206
Austin, TX 78746

[email protected]

Tel: 512-366-9109

Provides educational materials on restless legs syndrome and related  to individuals, their families, physicians, healthcare providers and supports medical research into the cause and cure for restless legs syndrome.


Rett Syndrome Research Trust

67 Under Cliff Road
Trumbull, CT 06611

[email protected]

Tel: 203-445-0041


Sarcoidosis Research Institute

3475 Central Avenue
Memphis, TN 38111

[email protected]

Tel: 901-830-4749

Non-profit organization dedicated to increasing knowledge about sarcoidosis by disseminating information to professionals, assisting with investigation into the cause and treatment of the disease, and by providing support for individuals afflicted with sarcoidosis.


Share and Care Cockayne Syndrome Network, Inc.

P.O. Box 282
Waterford, VA 20197

[email protected]

Tel: 703-727-0404; 865-435-9777
Fax:972-613-4590

Non-profit organization that supports parents, publishes a newsletter and pamphlet, and sponsors an annual retreat.


Sjogren’s Syndrome Foundation

6707 Democracy Blvd.
Suite 325
Bethesda, MD 20817

[email protected]

Tel: 800-4-SJOGREN (475-6473)
Fax:301-530-4415

National nonprofit organization of patients, caregivers, and healthcare providers dedicated to support, education, and the stimulation of research toward better treatments and a cure for Sjogren’s syndrome.


Social Security Administration

6401 Security Blvd.
Windsor Park Building
Baltimore, MD 21235

Tel: 410-966-3000; 800-772-1213; 800-325-0778 (TTY)
Fax:410-965-0696


Sotos Syndrome Support Association

P.O. Box 4626
Wheaton, IL 60189

[email protected]

Tel: 888-246-7772

Non-profit organization that offers an information clearinghouse and support network for families affected by Sotos Syndrome, or cerebral gigantism.


Spasmodic Torticollis Dystonia/ST Dystonia

P.O. Box 28
Mukwonago, WI 53149

[email protected]

Tel: 262-560-9534; 888-445-4588
Fax:262-560-9535

Non-profit support resource for individuals with spasmodic Torticollis. Offers a magazine and sponsors symposia.


Spastic Paraplegia Foundation

1605 Goularte Place
Fremont, CA 94539-7241

[email protected]

Tel: 877-773-4483

Volunteer driven, non-profit organization dedicated to finding the cures for Hereditary Spastic Paraparesis (HSP) and Primary Lateral Sclerosis (PLS).


Spina Bifida Association

4590 MacArthur Blvd. NW
Suite 250
Washington, DC 20007-4266

[email protected]

Tel: 202-944-3285; 800-621-3141
Fax:202-944-3295

Non-profit association that provides information and referrals through a clearinghouse and toll-free number. Promotes research into the causes, treatment and prevention of Spina Bifida; conducts public awareness campaigns; and encourages socialization and training for people with Spina Bifida.


Spinal Muscular Atrophy Foundation

888 Seventh Avenue
Suite 400
New York, NY 10019

[email protected]

Tel: 877-FUND-SMA (386-3762); 646-253-7100
Fax:212-247-3079

Non-profit foundation dedicated to accelerating the development of a treatment or cure for SMA.


Sturge-Weber Foundation

P.O. Box 418
Mt. Freedom, NJ 07970

[email protected]

Tel: 973-895-4445; 800-627-5482
Fax:973-895-4846

International non-profit organization established for support, referral, advocacy, and research into the management and cause of Sturge-Weber Syndrome (SWS). Also serves parents, professionals, and others concerned with Klippel-Trenaunay Syndrome and port wine stain.


Substance Abuse and Mental Health Services Administration

1 Choke Cherry Road
Rockville, MD 20857

Tel: 800-662-HELP (1-800-662-4357)

A nonprofit group whose mission is to advance research on chordoma, a type of tumor that grows in brain and spinal cord.


TBI Network

P.O. Box 121012
West Melbourne, FL 32912-1012

International support network, survivor founded and run, for traumatic brain injury. Focuses on positive communication between persons with brain injury, their family members, caregivers, and friends.


The Arc of the United States

1825 K Street, NW
Suite 1200
Washington, DC 20006

[email protected]

Tel: 202-534-3700; 800-433-5255
Fax:202-534-3731

Promotes and protects the human rights of people with intellectual and developmental disabilities and actively supports their full inclusion and participation in the community throughout their lifetimes.


The Bluefield Project to Cure Frontotemporal Dementia

637 Carolina Street
San Francisco, CA 94107

[email protected]

Tel: 650-208-3478

Raises awareness of and increases support to accelerate and fund research directed toward curing frontotemporal dementia (FTD).


The Charlie Foundation for Ketogenic Therapies

515 Ocean Avenue
Suite 602N
Santa Monica, CA 90402

[email protected]

Tel: 310-393-2347
Fax:310-453-4585

Raises money for scientific research, education and public awareness of diet therapies for epilepsy. Offers education, programs, and materials for caregivers, dietitians, physicians and hospitals.


The Guthy-Jackson Charitable Foundation

10525 Vista Sorrento Pkwy
Suite 210

San Diego, CA 92121

[email protected]

Tel: 858-638-7638
Fax:858-638-7698


The International Symposium on Neural Regeneration

694 Biomedical Research Tower

460 W. 12th Ave
Columbus, OH 43210

[email protected]

Tel: 614-688-8576

International symposium for neural regeneration. The 17th symposium was held in California in late 2017.


The Multiple System Atrophy Coalition

9935-D Rea Road
Charlotte, NC 28227

[email protected]

Tel: 866-737-5999

National support group that collects and disseminates information and promotes education and support for people affected by Shy-Drager Syndrome or multiple system atrophy.


The Parkinson’s Institute and Clinical Center

675 Almanor Avenue
Sunnyvale, CA 94085

[email protected]

Tel: 408-734-2800; 800-655-2273
Fax:408-734-8522

Non-profit organization conducting patient care and research activities in the neurological specialty area of movement .


ThinkFirst National Injury Prevention Foundation

1801 N. Mill Street
Suite F
Naperville, IL 60563

[email protected]

Tel: 630-961-1400; 800-THINK-56 (844-6556)

National injury prevention program dedicated to preventing brain, spinal cord, and other traumatic injuries through the education of individuals, community leaders, and creators of public policy. ThinkFirst is a 501(c)(3) organization.


TMJ Association Ltd.

P.O. Box 26770
Milwaukee, WI 53226-0770

[email protected]

Tel: 262-432-0350
Fax:262-432-0375

National non-profit organization providing information on Temporomadibular Joint and Muscle  (TMJDs), pain and/or dysfunction of the jaw joint affecting a person’s ability to speak, eat, chew, smile, kiss, and even breathe. The TMJ Association Ltd., is dedicated to promoting awareness, education and scientific research.


TNA — Facial Pain Association (formerly the Trigeminal Neuralgia Association)

408 W. University Avenue
Suite 602
Gainesville, FL 32601

[email protected]

Tel: 352-384-3600; 800-923-3608
Fax:352-331-3606

Non-profit organization that serves as an advocate for patients living with neuropathic facial pain, including trigeminal neuralgia, by providing information, encouraging research, and offering support.


Tourette Association of America

42-40 Bell Boulevard
Suite 205
Bayside, NY 11361-2820

[email protected]

Tel: 888-4486-8738
Fax:718-279-9596

Association dedicated to serving people with Tourette Syndrome and  scientific research. TSA maintains chapters in each state and cooperates with contacts in 45 foreign countries. Inquirers receive free material and a local physician referral listing. TSA publishes materials for families, physicians, and researchers and offers a quarterly newsletter.


Transverse Myelitis Association

1787 Sutter Parkway
Powell, OH 43065-8806

[email protected]

Tel: 614-317-4884; 855-380-3330

Nonprofit organization dedicated to advocacy for those who have rare neuroimmunologic diseases of the central nervous system, including transverse myelitis (TM), acute disseminated encephalomyelitis (ADEM), optic neuritis, and neuromyelitis optica (Devic’s disease). Facilitates support and networking programs, offers educational materials, sponsors an information clearinghouse, and investigates, advocates for, and supports research and innovative treatment efforts. Offers a newsletter and an international membership directory.


Tremor Action Network

P.O. Box 5013
Pleasanton, CA 94566-5013

[email protected]

Tel: 510-681-6565; 925-462-0111
Fax:925-369-0485

National non-profit dedicated to increasing awareness of essential tremor by advocating for a cure through research. Offers support for patients, family members, and caregivers through a quarterly newsletter, videos, and guidance from advocates.


Tuberous Sclerosis Alliance

801 Roeder Road
Suite 750

Silver Spring, MD 20910-4467

[email protected]

Tel: 301-562-9890; 800-225-6872
Fax:301-562-9870

National non-profit voluntary health organization dedicated to finding a cure for tuberous sclerosis while improving the lives of those affected.


United Brachial Plexus Network

1610 Kent Street
Kent, OH 44240

[email protected]

Tel: 781-315-6161; 866-877-7004
Fax:866-877-7004

Non-profit organization devoted to providing information, support and leadership for families and those concerned with brachial plexus injuries and their prevention worldwide.


United Cerebral Palsy (UCP)

1825 K St NW
Suite 600
Washington, DC 20006

[email protected]

Tel: 202-776-0406; 800-USA-5UCP (872-5827)
Fax:202-776-0414

Educates, advocates and provides support services to ensure a life without limits for people with a spectrum of disabilities.


United Leukodystrophy Foundation

224 North 2nd Street, Suite 2

DeKalb, IL 60115

[email protected]

Tel: 815-748-3211; 800-728-5483
Fax:815-748-0844

Nonprofit voluntary health organization dedicated to providing patients and their families with information; assistance in identifying sources of medical care, social services, and genetic counseling; establishing a communication network among families; increasing public awareness, and acting as an information source for health care providers. Promotes supports research into causes, treatments, and prevention of the leukodystrophies.


United Mitochondrial Disease Foundation

8085 Saltsburg Road
Suite 201
Pittsburgh, PA 15239

[email protected]

Tel: 412-793-8077; 888-317-UMDF (8633)
Fax:412-793-6477

Promotes research for cures and treatments of mitochondrial  and provides support for affected families. Represents adults and children alike and continues to serve families with a variety of programs.


United Spinal Association

120-34 Queens Boulevard, #320

Kew Gardens, NY 11415

[email protected]

Tel: 718-803-3782; 800-962-9629
Fax:866-387-2196

The United Spinal Association is dedicated to improving the quality of life for hundreds of thousands of Americans living with the results of spinal cord injury and disease (SCI/D) and their families. NSCIA, educates and empowers survivors of SCI/D to achieve and maintain the highest levels of independence, health and personal fulfillment.


United Spinal Association

75-20 Astoria Boulevard
East Elmhurst, NY 11370

[email protected]

Tel: 718-803-3782; 800-404-2898
Fax:718-803-0414

National disability rights organization dedicated to enhancing the lives of individuals with spinal cord injury or disease by ensuring quality healthcare, promoting research, advocating for civil rights and independence, educating the public about these issues, and enlisting its help to achieve these fundamental goals.


University of Maryland Brain and Tissue Bank

University of Maryland Dept. of Pediatrics
655 West Baltimore Street, 13-013 BRB
Baltimore, MD 21201-1559

[email protected]

Tel: 800-847-1539
Fax:410-706-0020

Collects, stores, and distributes brain and other tissues for purposes of research to improve understanding, care, and treatment of individuals with developmental .


Vascular Birthmarks Foundation

P.O. Box 106
Latham, NY 12110

[email protected]

Tel: 877-VBF-4646 (823-4646)

Provides support and resources for children and adults born with hemangiomas, port wine stains, and other vascular birthmarks.


Vestibular  Association (VEDA)

P.O. Box 13305
Portland, OR 97213-0305

[email protected]

Tel: 800-837-8428
Fax:503-229-8064

Non-profit organization that provides information and support to people with inner-ear balance , including Meniere’s disease and positional vertigo.


Von Hippel Lindau Family Alliance

2001 Beacon Street
Suite 208
Boston, MA 02135-7877

[email protected]

Tel: 617-277-5667; 800-712-8712
Fax:858-712-8712

Dedicated to improving the diagnosis, treatment, quality of life, and ultimately a cure for individuals and families affect by von Hippel-Lindau and other forms of cancer. Provides education and support through brochures, handbook, newsletters, online support groups, and 24-hour hotline. Offers competitive research.


Wake Up Narcolepsy

P.O. Box 60293
Worcester, MA 01606

[email protected]

Tel: 774-364-4965


Well Spouse Association

63 West Main Street
Suite H
Freehold, NJ 07728

[email protected]

Tel: 800-838-0879; 732-577-8899
Fax:732-577-8644

International non-profit, volunteer-based organization whose mission is to provide emotional support to, raise consciousness about, and advocate for the spouses/partners of the chronically ill and/or disabled.


Williams Syndrome Association

570 Kirts Blvd
Suite 223
Troy, MI 48084

[email protected]

Tel: 248-244-2229; 800-806-1871
Fax:248-244-2230

Non-profit tax-exempt corporation that works to enrich the lives of individuals with characteristics of Williams syndrome.


Wilson Disease Association

5572 N. Diversey Blvd.
Milwaukee, MI 53217

[email protected]

Tel: 414-961-0533; 866-961-0533
Fax:414-962-3886

All-volunteer organization that strives to promote the well-being of patients with Wilson Disease and their families and friends.


World Headache Alliance

208 Lexington Road
Oakville
Ontario, CANADA L6H 6L6

[email protected]

Tel: 905-257-6229
Fax:905-257-6239


World Health Organization

Avenue Appia 20
1211 Geneva 27
Switzerland,

[email protected]

Tel: (+ 41 22) 791 21 11
Fax:(+ 41 22) 791 3111

Worldwide Syringomyelia & Chiari Task Force

P.O. Box 491975
Lawrenceville, GA 30049

[email protected]

Tel: 914-510-2873

Our mission is to educate the world about Syringomyelia. Our purpose is to educate the world about this disease and provide those diagnosed with hope. We’re confident that by providing durable medical equipment, prescription assistance, and excellent resources within the medical community, we can improve awareness among the medical community and the general public about the complex nature of this disease.

YoungStroke, Inc.

P.O. Box 692
Conway, SC 29528

[email protected]

Tel: 843-248-9019; 843-655-2835

National patient advocacy organization benefiting adult stroke survivors under 65. Works to change public perception of stroke through education and promotes research to enhance quality of life for survivors and their caregivers. Initiatives include education for health professionals and patients, public service campaigns, support group launches and more.