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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.
Hunter's Hope Foundation is a non-profit organization dedicated to providing education, awareness, and family support for individuals affected by Leukodystrophies and promoting Newborn Screening for early detection of serious conditions.
RDCP:PAG0000005
HDSA is the premier nonprofit organization dedicated to improving the lives of everyone affected by HD.
HDYO is dedicated to supporting young people affected by Huntington's Disease through education, resources, and community engagement.
The Huntington Society of Canada supports individuals and families affected by Huntington disease (HD) by providing counseling, advocacy, and funding for medical research.
RDCP:PAG0000110
The Hydrocephalus Association supports individuals affected by hydrocephalus through research funding, community resources, and advocacy efforts.
Hydrocephalus Canada supports individuals and families impacted by spina bifida and hydrocephalus, providing resources, advocacy, and emotional support.
RDCP:PAG0000111
The Hyper IgM Foundation is a non-profit organization dedicated to improving the treatment, quality of life, and long-term outlook for children and adults living with Hyper IgM Syndrome through research, support, education, and advocacy.
The Hypermobility Syndromes Association supports individuals with symptomatic hypermobility by providing management-focused patient support groups, educational programs, and advice for both patients and healthcare professionals.
RDCP:PAG0000112
The Hypersomnia Foundation supports individuals with idiopathic hypersomnia and related sleep disorders by providing resources, education, and a community for those affected.
The Hypertrophic Cardiomyopathy Association (HCMA) provides support, education, and advocacy for individuals affected by Hypertrophic Cardiomyopathy (HCM), a common genetic heart disorder.
RDCP:PAG0000113
RDCP:PAG0000114
The HypoPARAthyroidism Association is a non-profit organization dedicated to improving the lives of individuals affected by hypoPARAthyroidism through education, support, research, and advocacy.
I AM ALS is a non-profit organization that empowers people living with ALS, supports their families, and advocates for research and policy change to improve lives and find a cure.
RDCP:PAG0000115
Changing Faces is a charity that provides support and promotes respect for individuals with visible differences, offering services like emotional support and skin camouflage advice.
RDCP:PAG0000116
The IgA Nephropathy Foundation is dedicated to supporting individuals affected by IgA Nephropathy through patient advocacy, funding research, and providing resources for better treatment options.
The IgG4ward! Foundation provides support, education, and advocacy for individuals affected by IgG4-related disease (IgG4-RD), a rare immune-mediated disorder.
The Ileostomy and Internal Pouch Association (IA) is a registered charity that supports individuals living with an ileostomy or internal pouch, providing resources, information, and one-to-one support for patients and their families.
RDCP:PAG0000117
The organization supports patients with rare diseases through various services, including medical rehabilitation, education, and advocacy efforts.
RDCP:PAG0000292
The Immune Deficiency Foundation supports patients and families affected by primary immunodeficiency diseases, including DiGeorge syndrome and 22q11.2 deletion syndrome.
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