Kisho is an information platform, not a medical provider. Nothing on this site constitutes medical advice, diagnosis, or treatment recommendations. All content is aggregated from publicly available sources (including ClinicalTrials.gov, PubMed, FDA.gov, and Orphanet) and is provided for informational purposes only. Clinical trial eligibility, treatment decisions, and any health-related actions should always be discussed with a qualified healthcare professional. Kisho does not endorse any specific therapy, organization, or clinical trial. Terms of use · Privacy policy
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.
Disability Rights North Carolina (DRNC) advocates for the civil rights of people with disabilities in North Carolina, providing free legal assistance and resources to help them live independently and access necessary services.
ACT for Life Services is a non-profit organization that provides advocacy, planning, and trust services for individuals with physical or intellectual disabilities, ensuring they maintain government benefits and a higher quality of life.
Disabled Peoples' International (DPI) is a human rights organization dedicated to protecting the rights of people with disabilities and promoting their full participation in society, with active membership in over 130 countries.
RDCP:PAG0000073
The DLG4 SHINE Foundation supports families affected by DLG4-related Synaptopathy, an ultra-rare genetic disease, while advancing research to find effective treatments.
The Dravet Syndrome Foundation supports individuals and families affected by Dravet syndrome, a severe form of epilepsy, by funding research, increasing awareness, and providing assistance.
Dreamsickle Kids Foundation provides support and resources for children and families affected by Sickle Cell Disease and other Rare Diseases in Nevada, focusing on education, advocacy, and community outreach.
The DRESS Syndrome Foundation is dedicated to supporting patients and families affected by DRESS Syndrome, a severe drug reaction, while educating the public and advocating for research and treatment.
The DTDS Foundation supports research and provides resources for families affected by dopamine transporter deficiency syndrome (DTDS), a rare movement disorder.
RDCP:PAG0000074
The organization focuses on raising awareness and providing resources for individuals affected by Dup15q syndrome, a neurodevelopmental disorder associated with an extra copy of a portion of chromosome 15.
Duplication Cares supports families with children and adults diagnosed with 7q11.23 Duplication Syndrome and raises awareness in the medical community about this disorder.
RDCP:PAG0000075
This organization supports children with DYRK1A Syndrome and their families, providing resources and advocacy for those affected by this condition.
The Dystonia Medical Research Foundation supports research and awareness for individuals affected by dystonia, providing resources and community connections for patients and families.
Dystonia UK provides support and awareness for individuals living with dystonia, offering resources such as podcasts, events, and community engagement.
Easterseals provides essential services to children and adults with disabilities, older adults, veterans, and their families, focusing on support across employment, health, education, community, and transportation.
The EA/TEF Family Support Connection provides educational resources and emotional support for families of children born with Esophageal Atresia and Tracheoesophageal Fistula (EA/TEF).
The Eating Disorders Association Inc (Qld) is a non-profit organization that provides information, support, referrals, and support group services for individuals affected by eating disorders in Queensland, Australia.
RDCP:PAG0000077
The Erdheim-Chester Disease Global Alliance provides support and resources for individuals affected by Erdheim-Chester Disease, including information on treatment options and connections to care centers.
RDCP:PAG0000078
The Ehlers Danlos Society advocates for individuals affected by Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD), providing education, support, and funding for research.
Ehlers-Danlos Support UK is a charity dedicated to supporting individuals affected by Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorders (HSD) by providing access to medical services, support groups, and resources.
RDCP:PAG0000079
Einstök börn is a support organization for children and adolescents with rare diseases or syndromes, providing various services and support to families.
Run a patient organization? Claim your profile or register a new one.