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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.
RDCP:PAG0000199
Research!America is a patient advocacy organization that promotes science, discovery, and innovation to achieve better health for all.
RESOLVE: The National Infertility Association provides support and advocacy for individuals facing infertility, working to improve access to infertility treatments and insurance coverage.
The Restricted Growth Association UK advocates for individuals with dwarfism, providing resources, support, and opportunities for community engagement.
Retina International is dedicated to supporting individuals and families affected by retinal degenerative diseases through advocacy, research, and community engagement.
Groups.io provides a platform for online communities to manage email discussions and collaboration tools, focusing on privacy and user-friendly features.
RDCP:PAG0000200
The Rett Syndrome Research Trust (RSRT) is dedicated to curing Rett syndrome by funding genetic research and developing targeted genetic medicines.
RhizoKids International supports individuals with Rhizomelic Chondrodysplasia Punctata (RCDP) through research programs, awareness events, and conferences aimed at improving the quality of life for affected families.
Riaan Research Initiative is dedicated to accelerating the development of treatments for Cockayne syndrome, a severe genetic disorder, by promoting and funding innovative research proposals.
Riverwood Center provides compassionate behavioral health, substance use disorder, and wellness services to individuals and families in Berrien County, Michigan, supporting mental health and overall well-being.
Raising Our Celiac Kids (ROCK) is a program by the National Celiac Association that provides resources and support for children and teens with celiac disease and their families, helping them navigate dietary and social challenges.
Ronald McDonald House provides support and resources for families with children who are ill or injured, offering them a place to stay close to hospitals and ensuring they have the comforts of home during difficult times.
RDCP:PAG0000201
The Rothmund-Thomson Syndrome Foundation raises awareness and supports research for Rothmund-Thomson Syndrome, a rare genetic disorder, while providing resources and community for affected individuals and families.
RDCP:PAG0000263
SADS UK is the UK's leading cardiac charity focused on raising awareness and providing support for Sudden Arrhythmic Death Syndrome and related inherited cardiac conditions.
Sail To Prevail is a non-profit organization that provides therapeutic sailing opportunities for disabled children and adults, helping them overcome adversity and improve their lives.
The Sam Day Foundation advocates for children battling cancer, focusing on funding research and wellness initiatives for pediatric cancers, particularly Ewing Sarcoma and other forgotten cancers.
The United Brachial Plexus Network supports individuals and families affected by brachial plexus injuries by providing information, resources, and connections to care providers.
The San Diego Regional Center provides support and services to persons with developmental disabilities and their families, helping them achieve their goals and maximize their independence.
SANE Australia provides support for individuals with complex mental health issues and trauma, offering free digital and telehealth services, community forums, and resources for recovery.
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