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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.
Cure Sanfilippo Foundation is dedicated to funding research and advocating for a cure for Sanfilippo Syndrome, a rare and terminal neurodegenerative disease affecting children.
CureSearch is a nonprofit organization dedicated to ending children's cancer by funding innovative research and developing safe and effective treatment options for pediatric cancers.
CureSHANK is dedicated to accelerating treatments and finding a cure for Phelan-McDermid Syndrome (PMS) by funding research and fostering collaborations among families, researchers, and industry.
Cure SMA is dedicated to driving research for treatments and a cure for spinal muscular atrophy (SMA), while providing support and resources for those impacted by the disease.
Cure VCP Disease, Inc. is dedicated to driving the development of a cure for diseases caused by the VCP gene, including muscle disease, bone disease, and neurodegenerative diseases like ALS and Parkinson's, while providing resources and support for patients and families.
RDCP:PAG0000061
The Curing Retinal Blindness Foundation supports individuals affected by CRB1-related retinal diseases through research funding and resource connection.
RDCP:PAG0000063
The Cushing's Support & Research Foundation provides resources, support, and information for individuals affected by Cushing's syndrome, including patient stories, doctor recommendations, and caregiver support.
The Cutaneous Lymphoma Foundation provides support and resources for individuals affected by cutaneous lymphomas, including information on diagnosis, treatment options, and patient support services.
RDCP:PAG0000064
The Cute Syndrome Foundation supports individuals affected by SCN8A, a rare genetic disorder, by funding research, providing family support, and organizing community events.
The Cyclic Vomiting Syndrome Association (CVSA) supports individuals affected by cyclic vomiting syndrome (CVS) by raising awareness, providing education, and funding research initiatives.
RDCP:PAG0000007
The mission of the Cystic Fibrosis Foundation is to cure cystic fibrosis and to provide all people with CF the opportunity to lead long, fulfilling lives.
CFRI is a nonprofit organization that funds innovative cystic fibrosis research and offers education, advocacy, and psychosocial support programs to those affected by cystic fibrosis.
RDCP:PAG0000065
The Cystinosis Research Foundation supports individuals affected by cystinosis through research funding, community support, and educational resources.
The DADA2 Foundation is dedicated to supporting patients and families affected by the rare genetic disease DADA2, facilitating research, and providing resources to improve understanding and treatment of the condition.
The Dana Foundation focuses on advancing neuroscience to address societal challenges and enhance well-being through collaborative research and public engagement.
The Dancing Eye Syndrome Support Trust provides support and information to families of children with Opsoclonus-myoclonus ataxia syndrome (OMAS), facilitating community connections and raising awareness about this rare autoimmune condition.
The Dandy-Walker Alliance is dedicated to serving and supporting individuals affected by Dandy-Walker Malformation, providing resources, education, and community support.
RDCP:PAG0000275
RDCP:PAG0000066
Danny's Dose advocates for specialized emergency care for individuals with bleeding disorders, providing resources and guidelines to improve treatment and care in emergency situations.
The Danon Foundation is a resource for individuals affected by Danon Disease, providing information and community support for this rare genetic condition.
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