Helping patients find information when they are discovering their disease
Join our members in finding the resources and support you need to navigate your health journey.
Featured Support Groups
Connect with these highly rated patient advocacy groups that are making a difference in their communities
Hope for Hypothalamic Hamartomas
Hope for Hypothalamic Hamartomas is dedicated to supporting research into hypothalamic hamartomas (HH), a rare brain disorder characterized by lesions in the ventral hypothalamic region. The organization funds and awards research grants, facilitates international symposia, and collaborates with leading medical and research institutions worldwide. Their research initiatives include genomic profiling, functional MRI studies, animal model development, and genetic research to better understand HH etiology, diagnosis, and treatment options. They actively support scientific exchange through conferences and publish research articles. The organization also engages in advocacy, provides educational resources, and partners with medical professionals and institutions to advance HH research and treatment.
Grace Kelly Childhood Cancer Trust
The Grace Kelly Childhood Cancer Trust was founded in 2016 in memory of four-year-old Grace. We fund research into rare and aggressive childhood cancers, educate families and clinicians about the signs and symptoms of childhood cancer and produce information booklets to explain to parents and children about the treatments they are facing. Locally, we provide financial, practical, and emotional support to families through our support service. Giving families a listening ear at the time when they need it most. Because no family should fight childhood cancer alone.
International Prader-Willi Syndrome Organisation
Since 1991 IPWSO has supported national PWS associations, as well as people with PWS, their families and the professionals who work with them. Our vision is a world where people with PWS and their families receive the services and support they need to fulfil their potential and achieve their goals. We are working to achieve this goal by uniting the global PWS community to collectively find solutions to the challenges of the syndrome and to support and advocate for people with PWS and their families, PWS associations, and professionals who work with people with PWS.
Osteogenesis Imperfecta Foundation
The mission of the OI Foundation is to improve the quality of life for those living with osteogenesis imperfecta through research, education, awareness and mutual support. The Osteogenesis Imperfecta Foundation, Inc., is a registered 501(c)(3) non-profit organization. Tax ID: 23-7076021. Information on this website may be reproduced provided a full citation of the source is given.
DM Cure DM
Our aims are: To preserve and protect good health among, and relive the needs of, people living with Myotonic Dystrophy, their families and carers, in particular but not exclusively by: * providing information, help and support to such people and their families and carers; * making financial donations to support organisations and individuals carrying out research into Myotonic Dystrophy, the useful results of which will be published for public benefit; and * raising awareness of Myotonic Dystrophy within the general public, medical and scientific communities.
Guts UK Charity
Guts UK is the national charity for the digestive system. They provide expert patient information and support for over 40 digestive conditions and symptoms affecting the gut, liver, and pancreas. They fund life-changing medical research into the whole digestive system, work to raise awareness, and educate people about digestive systems through campaigns and events.