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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:PAG0000056
CureARS is a non-profit organization dedicated to raising awareness and providing support for families affected by ultra-rare Mitochondrial ARS genes, while also funding research for related neurodegenerative disorders.
The Cure Blau Syndrome Foundation is dedicated to funding research and raising awareness for Blau syndrome, a rare degenerative disease, while providing education and advocacy for affected individuals and their families.
RDCP:PAG0000057
cureCADASIL is a nonprofit organization dedicated to uniting CADASIL patients and the medical community to advance research, treatments, and ultimately a cure for CADASIL, a rare inherited cerebrovascular disease.
Cure CMD is dedicated to advancing research and supporting individuals affected by congenital muscular dystrophies, a group of rare genetic disorders characterized by muscle weakness and various physical impairments.
CureCMT4J is a non-profit organization focused on advancing treatments for CMT4J, a rare neurological disease, through research and fundraising efforts.
CureDuchenne is dedicated to curing Duchenne muscular dystrophy through innovative venture philanthropy, funding research, and providing education and support for affected families.
CURE Epilepsy is a nonprofit organization dedicated to funding research aimed at finding a cure for epilepsy and supporting initiatives related to various forms of the disease.
Cure GM1 Foundation is dedicated to funding research and supporting advocacy for GM1 gangliosidosis, a fatal degenerative disease, to improve the lives of affected children and families.
RDCP:PAG0000058
CureGRIN Foundation is dedicated to improving the lives of individuals affected by GRI Disorders, which are rare genetic conditions. The organization focuses on raising awareness, funding research, and providing support to families impacted by these disorders.
Cure HHT is dedicated to raising awareness and improving treatments for Hereditary Hemorrhagic Telangiectasia (HHT), a genetic disorder affecting blood vessels, while also providing support and resources for patients and families.
Cure LBSL is dedicated to finding a cure for LBSL, raising awareness, and supporting patients and families affected by this rare disease.
RDCP:PAG0000059
The CureLGMD2i Foundation supports research, advocacy, and awareness programs for Limb Girdle Muscular Dystrophy Type 2I/R9, aiming to find a cure and improve the lives of those affected by this rare disease.
Cure MAPT FTD is dedicated to supporting families affected by MAPT FTD through educational resources, genetic testing options, and research collaboration aimed at finding treatments and a cure.
The Cure Mito Foundation is a patient advocacy organization dedicated to supporting individuals affected by Leigh syndrome and mitochondrial diseases through research, resources, and community support.
The Association Cure MVID is dedicated to finding therapies for Microvillus Inclusion Disease (MVID), a rare genetic disorder affecting the intestines of newborns, while also supporting patients and their families.
CureNFwithJack is dedicated to accelerating medical research and raising funds to end Neurofibromatosis (NF) through community action and various fundraising events.
CurePDE is dedicated to empowering and uniting families affected by pyridoxine-dependent epilepsy (PDE) while advancing research to find a cure and providing support and resources for those impacted by the condition.
RDCP:PAG0000060
CurePSP is a nonprofit organization dedicated to raising awareness and providing support for individuals affected by progressive supranuclear palsy (PSP), corticobasal degeneration (CBD), and multiple system atrophy (MSA).
CURE RAGHAV is a patient advocacy organization focused on finding a cure for GPX4 disease, a rare genetic condition affecting children, by raising funds and collaborating with researchers and doctors.
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