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.
RDCP:PAG0000213
The Snyder-Robinson Foundation is dedicated to advancing research and support for individuals affected by Snyder-Robinson Syndrome and related disorders, aiming to improve their lives through medical advancements and community connection.
The Society for Investigative Dermatology (SID) is a not-for-profit organization dedicated to advancing the sciences relevant to skin disease through education, advocacy, and scholarly exchange of scientific information.
MPS Austria is dedicated to supporting children with Mucopolysaccharidoses (MPS) and their families by providing emotional, practical, and financial assistance, as well as raising awareness about this rare disease.
The Society for the Study of Reproduction is a leading organization focused on advancing reproductive biology in biomedicine and agriculture, providing resources and support for researchers, clinicians, educators, and students.
RDCP:PAG0000214
Soft Bones is a patient advocacy organization focused on hypophosphatasia (HPP), providing education, community support, and funding for research to improve understanding and treatment of this rare genetic disorder.
RDCP:PAG0000262
The Sotos Syndrome Support Association (SSSA) provides social support for families and professionals affected by Sotos syndrome, facilitating idea exchange and coping strategies.
The Southeastern Regional Genetics Group (SERGG) is a non-profit organization focused on improving genetic services and resources in the southeastern United States, addressing inequities and enhancing communication among providers and consumers.
RDCP:PAG0000279
SparkHope is dedicated to helping people with rare diseases and their loved ones create a happy, meaningful, and hopeful life through community building and mental health support.
The Spastic Paraplegia Foundation is dedicated to advancing research and finding cures for Hereditary Spastic Paraplegia and Primary Lateral Sclerosis, while providing education and support for those affected by these neurological disorders.
The Spina Bifida and Hydrocephalus Association of Canada advocates for individuals with spina bifida and hydrocephalus, providing support through programs like bursaries and research funding.
RDCP:PAG0000215
RDCP:PAG0000216
The Spinal CSF Leak Foundation aims to reduce the suffering of individuals affected by intracranial hypotension or spinal cerebrospinal fluid leaks by providing information, support, and resources for diagnosis and treatment.
The Spinal Muscular Atrophy Foundation aims to accelerate the development of treatments for Spinal Muscular Atrophy, a leading genetic cause of death in young children.
This organization provides information and support for various spinal conditions, including whiplash, spinal muscular atrophy, and back pain management.
The Spondylitis Association of America supports individuals affected by spondyloarthritis by providing educational resources, community connections, and advocacy for better diagnosis and treatment options.
RDCP:PAG0000217
The SSADH Association is dedicated to supporting children and families affected by Succinic Semialdehyde Dehydrogenase Deficiency (SSADH), an ultra-rare neurometabolic disorder, through education, advocacy, and research.
The STAG1 Gene Foundation is a patient-led organization that supports individuals with the STAG1 gene mutation by providing knowledge, resources, and advocacy to families and clinicians.
Starlight Children's Foundation provides programs that bring happiness and comfort to seriously ill and hospitalized children, including toy deliveries, gaming stations, and themed hospital gowns.
Run a patient organization? Claim your profile or register a new one.