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 Ramsay Hunt Syndrome Foundation supports individuals living with Ramsay Hunt syndrome through education, advocacy, and resources to improve care and understanding of the condition.
Rare Birds Foundation supports families affected by Adenylosuccinate Lyase Deficiency Disorder (ADSLD) and related purine disorders.
The Rare Cancer Research Foundation is dedicated to curing rare cancers through patient-powered research, facilitating effective research, and accelerating the deployment of promising therapies.
RDCP:PAG0000301
Unique helps families and professionals navigate the world of chromosome and gene disorders.
RDCP:PAGDEMO001
Sjældne Diagnoser is an organization that represents 55 associations for individuals affected by rare diseases and disabilities, providing support and advocacy to improve their conditions.
Rare Disease UK is a campaign by Genetic Alliance UK that raises awareness and advocates for individuals affected by rare diseases, providing support and information to the rare disease community.
Rare Disorders New Zealand advocates for individuals and their families living with rare disorders, aiming to improve access to health, disability, and education services for the 300,000 New Zealanders affected.
Rare Genomics Institute is a non-profit organization dedicated to bridging the healthcare gap for undiagnosed rare disease patients through advocacy, genomic sequencing, and partnerships with researchers and biomedical technology.
RDCP:PAG0000193
Raregivers provides emotional support to families living with rare, chronic, and complex diseases, offering workshops and resources to help caregivers manage their challenges.
Rare Trait Hope Fund is dedicated to finding a treatment for Aspartylglucosaminuria (AGU), a rare and fatal disease, by funding research and clinical trials while encouraging donations to support their efforts.
RDCP:PAG0000194
The RASopathies Network advocates for individuals with RASopathy syndromes, providing resources, support, and opportunities for research participation.
RDCP:PAG0000195
The Raymond A. Wood Foundation is a patient advocacy organization focused on improving the quality of life for survivors of craniopharyngioma and hypothalamic-pituitary brain tumors by providing access to education, technology, and evolving treatments.
The Raynaud's Association is a non-profit organization that provides support and education for individuals suffering from Raynaud's phenomenon, a condition characterized by exaggerated sensitivity to cold temperatures.
Reach is a volunteer-led charity that supports families and young people with upper limb differences, providing resources and a community for connection and learning.
RDCP:PAG0000196
The Recurrent Pregnancy Loss Association is dedicated to eliminating recurrent pregnancy loss through research, support, and awareness for those affected by miscarriage and fertility challenges.
The Recurrent Respiratory Papillomatosis Foundation advocates for patients with RRP by promoting non-surgical treatment options, providing resources, and fostering community support.
RDCP:PAG0000197
RSDSA provides support, education, and advocacy for individuals affected by Complex Regional Pain Syndrome (CRPS), while also driving research for better treatments and a cure.
The Relapsing Polychondritis (RP) Foundation supports patients with Relapsing Polychondritis by facilitating awareness, education, and research to improve their quality of life and advance a cure for this autoimmune disease.
RDCP:PAG0000198
Remember The Girls advocates for females impacted by X-linked conditions, providing support, resources, and family planning options.
Run a patient organization? Claim your profile or register a new one.