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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.
Encephalitis411 is dedicated to supporting individuals affected by encephalitis through advocacy, education, and free resources, while raising awareness about the disease and its impacts.
RDCP:PAG0000260
The Endometriosis Association provides support, advocacy, education, and resources for women and teens affected by endometriosis, a chronic and painful disease.
The Endometriosis Research Center (ERC) is dedicated to improving the lives of individuals affected by endometriosis through awareness, research, and education.
Equip for Equality is a legal advocacy organization that empowers people with disabilities in Illinois to advocate for their rights and provides resources to help them navigate issues related to education, employment, and discrimination.
The Erb's Palsy Group raises awareness and provides support for families affected by Erb's Palsy through education, advocacy, and community events.
RDCP:PAG0000080
EC Aware supports those affected by Esophageal Cancer and promotes awareness of esophageal health.
The European Chromosome 11 Network supports individuals and families affected by Jacobsen Syndrome and other chromosome 11 disorders by providing resources, fostering connections, and raising awareness.
L'Association ELA supports families affected by leukodystrophies and funds research to combat these diseases.
RDCP:PAG0000268
The European Organisation for Research and Treatment of Cancer (EORTC) focuses on improving cancer treatment and research through clinical trials and collaboration among a network of members across various countries.
The European Society for Immunodeficiencies (ESID) is a non-profit association dedicated to improving knowledge in the field of Primary Immunodeficiency (PID) through research, education, and collaboration among healthcare professionals.
RDCP:PAG0000081
EURORDIS-Rare Diseases Europe is a patient advocacy organization that supports individuals affected by rare diseases and promotes research and policy initiatives to improve their lives.
RDCP:PAG0000076
The E.WE Foundation provides global resources and support for families affected by Trisomy 18 and other rare diseases, offering education, emotional care, and direct assistance.
The Eye Cancer Foundation supports research and education related to eye cancers, providing resources and training for ophthalmologists and patients affected by ocular tumors.
The Fabry Support & Information Group (FSIG) raises awareness of Fabry disease, advocates for community needs, and provides support and information to affected families and individuals.
RDCP:PAG0000082
FACES: The National Craniofacial Association provides financial aid for medical travel and support for children and adults with craniofacial disorders.
The Facial Pain Association (FPA) is dedicated to supporting individuals affected by neuropathic facial pain through education, resources, and community support.
RDCP:PAG0000083
The Familial Dysautonomia Foundation supports individuals affected by Familial Dysautonomia, a rare genetic disorder, by funding research, providing medical care, and offering social services and advocacy.
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