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.


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
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 disorders.


Autism Science Foundation

28 West 39th Street
Suite 502
New York, NY 10018
Tel: 212-391-3913
Fax: 212-228-3557

Provides funding and other assistance to scientists and organizations conducting, facilitating, publicizing and disseminating autism research and serves to increase awareness of autism spectrum disorders 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
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 disorders. Provides research grants and fellowships and sponsors scientific conferences.


Autism Tissue Program

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

1175 Dublin Road
Columbus, OH 43215
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.

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