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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.
Spina Bifida Association
Non-profit association that provides information and referrals through a clearinghouse and toll-free number. Promotes research into the causes, treatment and prevention of Spina Bifida; conducts public awareness campaigns; and encourages socialization and training for people with Spina Bifida.
Spinal Muscular Atrophy Foundation
Non-profit foundation dedicated to accelerating the development of a treatment or cure for SMA.
Sturge-Weber Foundation
International non-profit organization established for support, referral, advocacy, and research into the management and cause of Sturge-Weber Syndrome (SWS). Also serves parents, professionals, and others concerned with Klippel-Trenaunay Syndrome and port wine stain.
Substance Abuse and Mental Health Services Administration
A nonprofit group whose mission is to advance research on chordoma, a type of tumor that grows in brain and spinal cord.
TBI Network
International support network, survivor founded and run, for traumatic brain injury. Focuses on positive communication between persons with brain injury, their family members, caregivers, and friends.
The Arc of the United States
Promotes and protects the human rights of people with intellectual and developmental disabilities and actively supports their full inclusion and participation in the community throughout their lifetimes.
The Bluefield Project to Cure Frontotemporal Dementia
Raises awareness of and increases support to accelerate and fund research directed toward curing frontotemporal dementia (FTD).
The Charlie Foundation for Ketogenic Therapies
Raises money for scientific research, education and public awareness of diet therapies for epilepsy. Offers education, programs, and materials for caregivers, dietitians, physicians and hospitals.
The Guthy-Jackson Charitable Foundation
The Multiple System Atrophy Coalition
National support group that collects and disseminates information and promotes education and support for people affected by Shy-Drager Syndrome or multiple system atrophy.