Provides services to help children and adults with disabilities and/or special needs as well as support to their families.
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.
Sponsors research programs, collaborative training initiatives, advocacy efforts, and international programs focused on pediatric AIDS and other serious and life-threatening diseases affecting chil
Magazine that provides information, support, ideas, encouragement, and outreach for parents and families of children with disabilities and the professionals who work with them.
National charitable organization dedicated to the welfare of people with epilepsy.
Tel:
Non-profit support and information group that works to raise awareness of Fabry disease and its symptoms.
Non-profit organization that serves as an advocate for patients living with neuropathic facial pain, including trigeminal neuralgia, by providing information, encouraging research, and offering sup
Nonprofit organization that funds innovative research to end facial pain.
Tel:
Facilitates support groups, publishes a newsletter, organizes conferences and meetings, and awards research grants towards the prevention, cause and treatment of FacioScapuloHumeral muscular dystro
Tel:
Non-profit organization that supports medical research grants and clinical care; provides information; and offers chapters nationwide and overseas.
Supports and assists families and caregivers of adults with debilitating health conditions. Offers programs and consultation on caregiving issues at local, state, and national levels.