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Search 1,288 verified patient advocacy organizations — the community, research advocates, and family-support groups working on rare diseases.
Kisho provides public health information only — not medical advice. Always consult your healthcare provider.
First Candle is committed to ending Sudden Infant Death Syndrome (SIDS) and other sleep-related infant deaths while providing bereavement support to families who have experienced a loss.
RDCP:PAG0000089
flok is a patient advocacy organization focused on improving care and research for individuals managing inherited disorders of protein metabolism, such as PKU, HCU, and MSUD, by combining patient-reported data with clinical and genetic records.
The Focus Foundation is dedicated to increasing awareness, early detection, and innovative treatments for X & Y Chromosomal Variation Disorders, including conditions like Klinefelter syndrome and Triple X syndrome.
FocusOnRhabdo provides educational resources and support for families affected by rhabdomyosarcoma, a rare pediatric cancer.
The FOD Family Support Group is a volunteer organization that provides support and awareness for families affected by Fatty Oxidation Disorders.
FARE is dedicated to improving the quality of life and health of individuals with food allergies through research, education, and advocacy.
FORCE is a patient advocacy organization focused on improving the lives of individuals facing hereditary cancer through support, research, and public policy advocacy.
A Foundation Building Strength is dedicated to advancing research and providing support for individuals affected by Nemaline Myopathy, a rare muscle disease that causes muscle weakness.
The Foundation for Angelman Syndrome Therapeutics (FAST) is dedicated to curing Angelman syndrome, a rare genetic condition affecting the nervous system, by supporting research and raising awareness.
This organization provides resources and support for individuals affected by condylar resorption, a disease that impacts the temporomandibular joint and can lead to significant functional and aesthetic challenges.
FIRST is dedicated to supporting individuals with ichthyosis and related skin disorders by providing resources, funding research, and maintaining the largest patient registry for ichthyosis information.
The Foundation for Peripheral Neuropathy provides resources and support for patients affected by peripheral neuropathy, focusing on funding research and raising awareness for the disease.
The Foundation for Prader-Willi Research is dedicated to eliminating the challenges of Prader-Willi syndrome (PWS) through research and therapeutic development.
The Foundation for Spinal Cord Injury Prevention, Care & Cure is a non-profit organization focused on the prevention, care, and cure of spinal cord injuries through public awareness, education, and funding research.
The Foundation for Thymic Cancer Research provides support, education, and outreach for patients affected by thymic cancer.
The Foundation for Women’s Cancer (FWC) is dedicated to increasing public awareness of gynecologic cancer risk, prevention, early detection, and optimal treatment.
The Foundation to Fight H-ABC supports families affected by H-ABC/TUBB4A-related leukodystrophy and drives research toward effective treatments and a cure for this rare neurological disorder.
RDCP:PAG0000090
The FOXG1 Research Foundation is dedicated to advancing research and advocating for patients with FOXG1 syndrome, a rare neurological genetic disorder, while supporting families worldwide.
The Fragile X Association of Michigan (FXAM) supports individuals affected by Fragile X syndrome through educational and emotional support, promotes awareness, and advances research for improved treatments and a cure.
The Fragile X Society supports individuals and families affected by Fragile X Syndrome by providing information, resources, and community support.
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