Patient Organizations

Patient Organizations


This listing is not intended to be a comprehensive listing of all not-for-profit health agencies in the United States, nor does inclusion of any particular organization imply endorsement by the National Institutes of Health or the Department of Health and Human Services. Our intent is to provide information useful to individuals nationally, and for this reason we have not included many local groups that offer valuable assistance to patients and their families within a limited geographic area. Many of the organizations listed in this directory have information available to the public on the World Wide Web.


Iron Disorders Institute

P.O. Box 4891
Greenville, SC 29608
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
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
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., funding dysferlin gene mutational analysis), funds and monitors research and progress, provides financial support to accelerate clinical trials, and encourages scientific collaboration.


Joe Niekro Foundation

26780 N. 77th Street
Scottsdale, AZ 85266
Tel: 877-803-7650


Joubert Syndrome & Related Disorders Foundation

9 Dorenfeld Court
Petalauma, CA 94952
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
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.


Kennedy's Disease Association

P.O. Box 1105
Coarsegold, CA 93614-1105
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
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
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
Tel: 404-935-6444; 800-539-9767
Fax: 480-422-5434

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

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