Dedicated to providing assistance to families affected by neurodegeneration with brain iron accumulation (formerly called Hallervorden-Spatz Syndrome) through support for research and educating the
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.
Non-profit organization made up of independent state and regional chapters that provide support and services to NF families.
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Nevus Outreach is dedicated to: improving awareness and providing support for people affected by congenital pigmented nevi, and finding a cure.
Supported by the NIMH, NINDS, and NICHD, the NIH NeuroBioBank was established in September 2013 as a national resource for investigators utilizing human post-mortem brain tissue and related biospecime
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Registry designed to determine what therapies are associated with increased risk of harmful fetal effects. Participation is confidential.
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Non-profit organization dedicated to serving the needs of its members—more than 19,000 veterans paralyzed by spinal cord injury or disease, as well as caregivers and others affected by these disabi
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Dedicated to ending Duchenne -- to accelerate research, advocate, demand optimal care for all young men, and educate the global community.
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Policy arm of the Michael J. Fox Foundation for Parkinson's Research.
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Provides research, patient services, clinical studies, public and professional education, and physician referrals at over 60 locations and through a nationwide network of chapters and support group
Helps families affected by Parkinson’s by offering emotional and educational support programs, publishing a monthly newsletter about quality of life and family issues, providing information and ref