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.

 

Conducts research and disseminates research-based information on the cause, prevention, and treatment of autism and related disorders.

Provides funding and other assistance to scientists and organizations conducting, facilitating, publicizing and disseminating autism research and serves to increase awareness of autism spectrum dis

Promotes lifelong access and opportunities for persons within the autism spectrum and their families through advocacy, public awareness, education, and research programs. 

Nonprofit organization dedicated to finding the causes, prevention, effective treatment and, ultimately, a cure for autism spectrum disorders.

National organization that works to alleviate suffering and the socioeconomic impact of autoimmunity.

Supports families and individuals affected by Barth syndrome through education, awareness, and research grant programs.

International support and research networking organization for families of children and young adults with Batten Disease. Sponsors education, advocacy, and support programs.

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.

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.

Department of Defense office that disseminates the latest information on medical research for the prevention, mitigation, and treatment of blast injuries.

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