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.
PAVE provides support, training, information, and resources to empower individuals, youth, and families impacted by disabilities in Washington.
PBD Project is a non-profit organization focused on funding medical research to improve the clinical outcomes for patients with Peroxisome Biogenesis Disorders, particularly Zellweger Spectrum Disorder.
The PCD Foundation is dedicated to improving the lives of individuals with Primary Ciliary Dyskinesia (PCD) through education, advocacy, and support for research.
The PCDH19 Alliance is dedicated to improving the lives of those affected by PCDH19 epilepsy through research, support, and community connection.
RDCP:PAG0000176
The Pediatric Retinal Research Foundation supports families affected by blinding pediatric retinal diseases and works towards finding cures.
RDCP:PAG0000177
The Pericarditis Alliance is a nonprofit organization dedicated to advocating for and raising awareness about pericardial disease, providing education and support for patients, caregivers, and healthcare providers.
The Periodic Paralysis Association is dedicated to raising awareness and providing resources for individuals affected by periodic paralysis, a group of disorders that cause temporary paralysis due to various triggers.
Perkins School for the Blind is dedicated to providing education services for children and young adults who are blind and visually impaired, along with multiple disabilities, while promoting inclusive education and support worldwide.
Perthes Kids Foundation is dedicated to raising awareness and providing support for children and families affected by Legg-Calvé-Perthes Disease, a rare degenerative hip bone disorder. They offer advocacy, education, and community support to help those impacted by this condition.
RDCP:PAG0000178
The PFIC Network supports individuals affected by Progressive Familial Intrahepatic Cholestasis (PFIC) by providing educational resources, direct support, and facilitating a patient registry to improve understanding and treatment of the disease.
RDCP:PAG0000179
The PHACE Syndrome Community is a nonprofit organization that supports individuals and families affected by PHACE Syndrome, providing resources and connections for those impacted by this rare disease.
PHA Europe is a patient advocacy organization focused on improving awareness and quality of life for individuals affected by pulmonary hypertension (PH) through education, advocacy, and collaborative programs.
phaware.global raises awareness and supports research for pulmonary hypertension (PH), a rare and life-threatening disease affecting lung arteries.
RDCP:PAG0000180
The Phelan-McDermid Syndrome Foundation supports individuals affected by Phelan-McDermid syndrome, providing resources, community support, and driving research for treatments and cures.
RDCP:PAG0000181
The Pheo Para Alliance supports individuals affected by pheochromocytoma and paraganglioma through education, research, advocacy, and community support.
The PHG Foundation focuses on integrating genomics into healthcare and addressing the implications of technological advancements in diagnosis and population health.
RDCP:PAG0000271
The Philippine Society for Orphan Disorders, Inc. is dedicated to improving the lives of patients with rare diseases in the Philippines by providing support, resources, and advocacy.
This organization provides support, information, and training for families of children and adults with disabilities, offering services such as consultations, support groups, and resources for navigating educational and developmental challenges.
Pilot Parents of Southern Arizona provides support and advocacy training for families with children who have special needs.
Run a patient organization? Claim your profile or register a new one.