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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.
The National MPS Society supports families affected by MPS and ML by providing resources, funding research, and advocating for change.
The National Niemann-Pick disease Foundation, Inc. (NNPDF) is a non-profit organization dedicated to supporting and empowering patients and families affected by Niemann-Pick disease through education, collaboration, and research.
The National Eye Institute is dedicated to eliminating vision loss and improving quality of life through vision research, funding research, and providing information about eye health and conditions.
The NODCC supports individuals and families affected by disorders of the corpus callosum (DCC) by providing resources, raising awareness, and fostering a supportive community.
NORD supports individuals with rare diseases by providing patient assistance programs, disease education, and advocacy for policy changes to improve their health and well-being.
The Parkinson's Foundation supports individuals affected by Parkinson's disease through resources, research initiatives, and community engagement to improve care and advance towards a cure.
The National Perinatal Association promotes evidence-based practices in perinatal care, advocating for pregnant people, infants, and families through collaboration, education, and community engagement.
NPKUA is dedicated to supporting individuals affected by a specific disease, focusing on community engagement and research efforts.
The Prune Belly Syndrome Network (PBSN) is a nonprofit organization dedicated to supporting individuals born with prune belly syndrome, providing education, advocacy, and resources for affected families.
The National Psoriasis Foundation advocates for individuals affected by psoriatic disease, providing resources, support, and funding for research aimed at finding a cure.
The National Rosacea Society is a non-profit organization dedicated to improving the lives of people with rosacea by raising awareness, providing public health information, and supporting medical research on this common skin disorder.
The National Scleroderma Foundation supports individuals affected by scleroderma through education, advocacy, and research initiatives aimed at improving treatment and finding a cure.
The National Scoliosis Foundation is a patient-led nonprofit organization dedicated to improving the lives of individuals affected by scoliosis through advocacy, education, and support services.
HIP Housing is a non-profit organization that helps create housing solutions for individuals and families in San Mateo County.
The National Shingles Foundation focuses on raising awareness about shingles and promoting the Shingrix vaccine for prevention, particularly among adults aged 50 and older.
The Sleep Foundation is dedicated to helping individuals improve their sleep through product reviews, sleep tests, and educational resources related to sleep disorders such as sleep apnea and insomnia.
The National Society for Phenylketonuria (NSPKU) is a UK charity dedicated to improving the lives of individuals living with phenylketonuria (PKU), providing support, information, and organizing conferences for affected families.
The National Society of Genetic Counselors advocates for genetic counselors, promoting their roles and ensuring equitable access to genomic healthcare through collaboration, education, and research.
Dysphonia International is a patient advocacy organization that supports individuals with voice disorders, including Spasmodic Dysphonia, by providing resources, research opportunities, and community connections.
The Spinal Cord Injury Resource Center provides resources and services to enhance the health, independence, and quality of life for individuals with spinal cord injuries or diseases.
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