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.


ALS Association

1300 Wilson Boulevard
Suite 600
Arlington, VA 22209
Tel: 800-782-4747
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
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
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
Tel: 800-272-3900
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 Education and Referral Center (ADEAR)

National Institute on Aging
Building 31, Room 5C27
Bethesda, MD 20892-2242
Tel: 1-800-438-4380
Fax: 301-495-3334


Alzheimer's Foundation of America

322 Eighth Avenue
16th Floor
New York, NY 10001
Tel: 866-232-8484)
Fax: 646-638-1546

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


Alzheimer’s Drug Discovery Foundation

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

19176 Half Road
Suite 130
Clinton Township, MI 48038
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
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.

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