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.


Autism Research Institute (ARI)

4182 Adams Avenue
San Diego, CA 92116
Tel: 619-281-7165; 833-281-7165
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

13 Continental Raod
Scarsdale, NY 10583
Tel: 949-810-9100
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

6110 Executive Boulevard
Suite 305
Rockville, MD 20852
Tel: 800-328-8476
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

6110 Executive Boulevard
Suite 305
Rockville, MD 20852
Tel: 800-328-8476
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: 888-288-4762; 888-772-9050 Spanish
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.


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
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
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

P.O. Box 12468
Beaumont, TX 77726-2468
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 disorders and infirmities of the facial musculature.


Birth Defect Research for Children, Inc.

976 Lake Baldwin Lane
Suite 104
Orlando, FL 32814
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.

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