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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.
The Hepatitis B Foundation is a global nonprofit dedicated to finding a cure and improving the quality of life for people affected by hepatitis B.
The VHL Alliance is dedicated to improving the quality of life and health outcomes for patients with Von Hippel-Lindau (VHL) disease through community building, education, and advancements in medical research.
The Hereditary Neuropathy Foundation (HNF) focuses on increasing awareness and accurate diagnosis of Charcot-Marie-Tooth (CMT) disease, supporting patients and families with critical information, and funding research for treatments and cures.
RDCP:PAG0000104
The HPS Network advocates for individuals with Hermansky-Pudlak Syndrome, a genetic disorder characterized by albinism, visual impairment, and bleeding issues, while providing support and information about the condition.
RDCP:PAG0000105
The Hide & Seek Foundation supports research to find treatments for Niemann Pick Type C (NPC), a rare genetic disease that leads to severe neurological decline and has no cure.
The HS Foundation supports individuals diagnosed with Hidradenitis Suppurativa (HS) by providing information, resources, and a peer support program to improve awareness and treatment options.
RDCP:PAG0000106
The Histiocytosis Association is a global nonprofit organization dedicated to addressing the unique needs of patients and families dealing with histiocytic disorders while leading the search for a cure.
The HNRNP Family Foundation is dedicated to improving the lives of patients and families affected by rare HNRNP-Related Neurodevelopmental Disorders through research, education, and community support.
Hope for Hypothalamic Hamartomas provides education, support, and research for individuals affected by hypothalamic hamartomas, focusing on early detection, improved treatments, and managing this complex medical syndrome.
Hope for PDCD Foundation is dedicated to accelerating research and advocacy for Pyruvate Dehydrogenase Complex Deficiency (PDCD), a rare pediatric disease, with a mission to find a cure and improve the quality of life for affected children.
Hope in Focus is a nonprofit organization dedicated to supporting the Leber Congenital Amaurosis (LCA) community through awareness, fundraising for research, and providing education and outreach services.
The Hospice Foundation of America supports individuals and families facing life-limiting illnesses by providing education on hospice care and grief support, while also conducting programs and research to improve care.
Hospitality Homes provides housing support for patients and their caregivers during medical treatment in Boston, helping to alleviate the burden of finding safe and affordable accommodations.
The House Institute Foundation focuses on advancing hearing health through research, education, and pediatric care, aiming to support individuals with hearing and balance disorders.
RDCP:PAG0000107
HPV Cancers Alliance is a national nonprofit dedicated to reducing the burden of HPV through education, prevention, and advocacy, providing evidence-based information on HPV infection, vaccination, and cancer prevention.
RDCP:PAG0000108
The HSAN1E Society raises awareness and provides support for families affected by Hereditary Sensory and Autonomic Neuropathy, Type 1E (HSAN1E) and similar DNMT-1 complex disorders.
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The Human Growth Foundation is a nonprofit organization that supports children and adults with rare growth, bone, and endocrine conditions through research, education, patient support, and advocacy.
RDCP:PAG0000109
The Hunters CMT4B3 Research Foundation is dedicated to finding treatments and cures for Charcot-Marie-Tooth Disease Type 4B3 and related neuromuscular disorders through funding research.
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