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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)
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)
Conducts research and disseminates research-based information on the cause, prevention, and treatment of autism and related disorders.
Autism Science Foundation
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
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
Research arm of the Autism Society of America. Raises and provides funds to support biomedical and applied autism research.
Autism Speaks, Inc.
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
Provides donated tissue for biomedical research.
Bachmann-Strauss Dystonia & Parkinson Foundation
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.
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
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.