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.
SPOHNC is dedicated to raising awareness and meeting the needs of oral and head and neck cancer patients through its resources and publications.
SAKKS supports families and caregivers of children with Kabuki Syndrome by providing information, resources, and community connections.
SOFT UK is dedicated to providing support for families affected by Trisomy 13 and Trisomy 18, ensuring they have access to resources and a safe space to share their experiences.
SOFT is a patient advocacy organization that supports families with children diagnosed with Trisomy 18, 13, and related chromosomal disorders by providing resources, information, and a supportive community.
RDCP:PAG0000264
Riksförbundet Sällsynta diagnoser is an advocacy organization in Sweden that works to improve conditions for individuals with rare health conditions and their families, representing their interests to decision-makers and enhancing healthcare and support services.
The SYNGAP1 Foundation is dedicated to improving the lives of families affected by SYNGAP1 and related overlapping neurological disorders through advocacy, education, and research initiatives.
RDCP:PAG0000225
TCOYD educates and motivates people with diabetes to take an active role in managing their condition and provides continuing education for healthcare professionals.
RDCP:PAG0000226
The TANGO2 Research Foundation is dedicated to improving the lives of those affected by TANGO2 deficiency disorder through research, advocacy, and support for families.
RDCP:PAG0000283
RDCP:PAG0000227
TargetCancer Foundation advocates for individuals diagnosed with rare cancers by advancing research and connecting the rare cancer community to improve treatment options.
The Tarlov Cyst Disease Foundation promotes research and education about Tarlov cysts, providing support and resources for patients and advocating for awareness within the medical community.
RDCP:PAG0000229
The organization supports families affected by Tatton Brown Rahman Syndrome (TBRS) by advancing research, providing resources, and fostering a community for patients, families, and clinicians.
Team PHenomenal Hope is dedicated to improving the lives of patients with pulmonary hypertension through various initiatives, including research awards and community support.
RDCP:PAG0000230
Team Telomere is dedicated to supporting individuals affected by Telomere Biology Disorders through information, advocacy, and community resources, while also advancing research for effective treatments and cures.
The TED Community Organization is dedicated to supporting individuals affected by Thyroid Eye Disease (TED) and Graves' Disease by providing trusted information, emotional support, and community connection.
TDI promotes equal access in telecommunications and media for individuals who are deaf, hard of hearing, late deafened, or deaf blind, providing education, technical assistance, and advocacy for accessibility issues.
RDCP:PAG0000231
The Texas Neurofibromatosis Foundation is a nonprofit organization dedicated to supporting individuals affected by neurofibromatosis through education, advocacy, and funding research for treatment and prevention.
Run a patient organization? Claim your profile or register a new one.