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.

Mucolipidosis IV (ML4) Foundation

1440 Spring Street, N.W.
Atlanta, GA 30309
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
Tel: 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
Tel: 954-776-6805; 888-673-6287
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.

Muscular Dystrophy Association

National Office - 222 S. Riverside Plaza
161 N. Clark, Suite 3550
Chicago, IL 60601
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
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
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
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 disorders 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
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 disorders, such as the leukodystrophies, and acquired disorders, such as multiple sclerosis.

Myelin Repair Foundation

18809 Cox Avenue
Suite 190
Saratoga, CA 95070
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

1940 Duke Street, Suite 200
Suite 600
Alexandria, VA 22314
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 disorders.