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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.
Project Alive is dedicated to finding a cure for Hunter syndrome, providing resources and support for affected individuals, parents, and healthcare providers.
Project FAVA supports the Fibro-Adipose Vascular Anomaly (FAVA) community through outreach, education, and connections to researchers and medical organizations.
Project Sleep is a non-profit organization dedicated to raising awareness about sleep health, sleep equity, and sleep disorders.
Project Sunshine is a nonprofit organization that delivers the healing power of play to children with medical needs through trained volunteers, reaching over 250,000 children and families annually.
The Propionic Acidemia Foundation is dedicated to finding improved treatments and a cure for Propionic Acidemia by funding research and providing information and support to families and medical professionals.
PSC Partners Seeking a Cure is dedicated to driving research for treatments and a cure for primary sclerosing cholangitis (PSC) while providing education and support for patients and caregivers affected by this rare disease.
RDCP:PAG0000284
PAPAA is a UK charity that provides support for individuals affected by psoriasis and psoriatic arthritis through education, advocacy, and access to expert information.
RDCP:PAG0000189
The PTEN Foundation supports individuals affected by PTEN Hamartoma Tumor Syndrome (PHTS) by funding research, providing education, and raising awareness about the condition.
PTEN UK & Ireland is a patient advocacy organization that supports individuals affected by PTEN Hamartoma Tumour Syndrome (PHTS) through healthcare advocacy, counseling services, and community grants.
PTEN World is a support and advocacy group for individuals and families affected by PTEN hamartoma tumor syndrome and related conditions, providing a platform for connection and awareness.
RDCP:PAG0000190
The PAP Foundation is a non-profit patient advocacy organization dedicated to finding a cure and improving the lives of those affected by Pulmonary Alveolar Proteinosis (PAP) through research promotion and support services.
The Pulmonary Hypertension Association (PHA) is dedicated to supporting individuals affected by pulmonary hypertension through education, resources, and community connections.
RDCP:PAG0000191
PVNH Support & Awareness is an international patient organization that supports families affected by Periventricular Nodular Heterotopia (PVNH), Grey Matter Heterotopia (GMH), and Subcortical Band Heterotopia (SBH) by providing education, resources, and advocacy.
PWN4PWN is a patient advocacy organization focused on supporting individuals with narcolepsy and idiopathic hypersomnia (IH) through resources like wellness programs, career workshops, and community support.
PXE International is an organization that supports individuals affected by Pseudoxanthoma Elasticum (PXE) through research and community engagement.
RDCP:PAG0000192
The Pyruvate Kinase Deficiency International Alliance enhances the quality of life for patients with PK deficiency and their families by providing awareness, education, and advocacy.
Disability Rights UK is a leading organization advocating for the rights and accessibility of Disabled people in the UK, working to influence policy and provide resources for better quality of life and economic opportunities.
The Raiden Science Foundation is dedicated to advancing treatment for UBA5 Disorder, a severe neurodevelopmental condition affecting children, through innovative research and gene therapy.
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