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.
The Pink Rocki Advocacy Foundation focuses on preparing youth for adulthood through programs in self-awareness, wellness, community service, and financial assistance for college-bound students.
RDCP:PAG0000182
The Pituitary Foundation supports individuals with pituitary conditions by providing information, resources, and community events to raise awareness and improve diagnosis and treatment.
RDCP:PAG0000183
The PKD Foundation is dedicated to finding treatments and a cure for polycystic kidney disease (PKD) while improving the lives of those affected by the disease through research, advocacy, and education.
This organization empowers people with disabilities through education, social innovation, and leadership initiatives, focusing on improving their quality of life.
RDCP:PAG0000184
The Plasminogen Deficiency Foundation is a non-profit organization dedicated to supporting patients with plasminogen deficiency (PLGD) and their families by providing education, community support, and financial assistance for treatment-related costs.
RDCP:PAG0000185
The Platelet Disorder Support Association (PDSA) is dedicated to providing information and support for individuals affected by immune thrombocytopenia (ITP), offering resources, community connections, and educational materials.
The PMD Foundation serves those affected by PMD and PMLD through education, research, service, and advocacy.
The PMG Awareness Organization provides support and resources for families affected by Polymicrogyria, fostering a community for education and assistance.
Postpartum Support International provides support and resources for families dealing with perinatal mental health issues, including postpartum depression, and offers training for professionals in the field.
The organization supports the community of polio survivors and provides resources and information on the late effects of polio.
The Prader-Willi Syndrome Association UK provides support and information for individuals affected by Prader-Willi Syndrome, offering resources for care and guidance.
RDCP:PAG0000186
The Prader-Willi Syndrome Association USA supports individuals and families affected by Prader-Willi syndrome through advocacy, awareness, and providing critical resources and information.
The Preeclampsia Foundation focuses on improving outcomes for women and babies affected by hypertensive disorders of pregnancy through education, support, and research.
Prevent Blindness is the nation's leading volunteer eye health and safety organization, dedicated to preventing blindness and preserving sight through education, advocacy, and support for individuals with vision problems.
The PBCers Organization is a support group for individuals affected by Primary Biliary Cholangitis (PBC), providing resources for peer support and information on the disease.
RDCP:PAG0000187
PRISMS is dedicated to providing information and support to families of persons with Smith-Magenis Syndrome (SMS), sponsoring research and fostering partnerships with professionals to increase awareness and understanding of SMS.
RDCP:PAG0000188
The Progeria Research Foundation is dedicated to discovering treatments and a cure for Progeria, a rare and fatal disease that causes rapid aging in children, and supports affected families through research and clinical trials.
UPMC Children’s Hospital of Pittsburgh is a leader in the treatment of childhood conditions and diseases, providing innovative therapies and education for pediatric care.
PSPA is the only UK charity dedicated to supporting individuals affected by Progressive Supranuclear Palsy and Corticobasal Degeneration through information, support, and research initiatives.
The Project 8p Foundation supports individuals affected by chromosome 8p disorders by raising funds for research and providing a community for families to navigate the challenges associated with these rare diseases.
Run a patient organization? Claim your profile or register a new one.