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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.
RDCP:PAG0000084
The FamilieSCN2A Foundation supports research and advocacy for SCN2A-related autism and epilepsy, providing resources and a community for affected families.
Family Caregiver Alliance provides support and resources for family caregivers, focusing on improving their quality of life and the care they provide to their loved ones.
The Family Resource Centers Network of California supports families of children with disabilities by providing resources, training, and advocacy to improve access to services.
Caregivers of New Jersey supports individuals with intellectual and developmental disabilities by providing access to services, respite care, and advocacy to help families navigate complex systems.
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Family Voices is a family-led nonprofit organization that transforms systems of care to better support children and youth with special health care needs or disabilities, providing training and technical assistance to engage families in health care systems.
RDCP:PAG0000085
The Fanconi Cancer Foundation is dedicated to improving the lives of individuals affected by Fanconi anemia and associated cancers through funding research and providing community support.
Fanconi Hope is a charitable organization that supports individuals and families affected by Fanconi Anaemia, a rare genetic disorder, by providing resources, funding research, and maintaining a patient registry.
RDCP:PAG0000086
FDRS is dedicated to improving the quality of life for all people affected by adipose tissue disorders, including lipedema and Dercum's disease, through research, education, advocacy, and collaboration.
The FCS Foundation provides support and resources for patients and caregivers affected by Familial Chylomicronemia Syndrome (FCS), promoting advocacy and education.
RDCP:PAG0000087
This organization advocates for the recognition, inclusion, and equity for individuals affected by rare diseases in Colombia.
FEDER is a Spanish federation that supports individuals with rare diseases and their families, focusing on advocacy, education, and research initiatives.
The Federation for Children with Special Needs provides information, support, and assistance to parents of children with disabilities, their professional partners, and their communities.
The Family Heart Foundation is dedicated to saving families from heart disease through awareness, early diagnosis, and education about familial hypercholesterolemia and high lipoprotein(a).
The Fibrolamellar Cancer Foundation is dedicated to finding a cure and supporting those impacted by fibrolamellar carcinoma through research and community engagement.
RDCP:PAG0000088
The Fibromuscular Dysplasia Society of America (FMDSA) is a not-for-profit patient advocacy organization dedicated to improving diagnosis and treatment for Fibromuscular Dysplasia (FMD) through awareness, research funding, and patient support.
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Fight for Sight supports and inspires eye and vision research by funding early-career scientists and providing grants for innovative research in ophthalmology.
Fondazione FIRMO is dedicated to combating bone diseases, providing resources for diagnosis and treatment, and promoting awareness and research in the field of rare bone conditions.
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