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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.
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Stevens-Johnson Syndrome Canada provides support for survivors, families, and caregivers affected by Stevens-Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN) through advocacy, awareness, and education.
RDCP:PAG0000218
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RDCP:PAG0000219
Pierre Robin Europe is a not-for-profit organization that supports patients with Pierre Robin Sequence by providing information, advocacy, and resources to improve access to care and raise awareness about the disease.
The TAPS Support Foundation is dedicated to raising awareness and providing support for families affected by Twin Anemia Polycythemia Sequence (TAPS), while also advocating for improved care and research related to this condition.
Stickler Involved People (SIP) is a support group for individuals with Stickler Syndrome, providing educational resources, virtual support groups, and community events to help those affected by this connective tissue disorder.
Stickler Syndrome UK is a charity focused on supporting individuals affected by Stickler Syndrome, a genetic condition impacting connective tissue, and provides resources and guidance to improve quality of life.
The organization provides support for individuals affected by Stiff Person Syndrome (SPS), including their families and caregivers, while promoting education and research about the condition.
RDCP:PAG0000220
The Stiff Person Syndrome Research Foundation supports research and raises awareness for Stiff Person Syndrome (SPS), a neurological disease, while providing education and community support.
RDCP:PAG0000266
The Sturge-Weber Foundation aims to improve the quality of life and care for individuals with Sturge-Weber syndrome and associated Port-Wine Birthmark conditions through collaboration, education, advocacy, and research.
RDCP:PAG0000221
The STXBP1 Foundation is dedicated to raising awareness and finding a cure for STXBP1-Related Disorder, a rare neurodevelopmental condition and genetic epilepsy, by working with families, physicians, scientists, and pharmaceutical innovators.
The SADS Foundation supports families affected by genetic heart conditions that can lead to sudden death due to arrhythmias, providing resources, research, and advocacy.
Sudden Infant Death Services of Illinois supports families who have lost a baby under the age of 1 year and provides safe sleep education to reduce sleep-related deaths.
RDCP:PAG0000222
The SUDC Foundation is dedicated to raising awareness, funding research, and providing support for families affected by sudden unexplained death in childhood (SUDC). They offer various services at no cost to those they serve.
Sundial Special Vacations provides travel excursions specifically designed for people with special needs and disabilities, ensuring a supportive and enjoyable experience for their clients.
RDCP:PAG0000223
The Superficial Siderosis Research Alliance (SSRA) is dedicated to supporting research, advocacy, and education for individuals affected by superficial siderosis, an ultra-rare neurodegenerative disorder.
RDCP:PAG0000224
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