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
Childhood Eye Cancer Trust
The Childhood Eye Cancer Trust (CHECT) is a UK charity dedicated to helping people affected by retinoblastoma, a rare form of eye cancer. We: • Provide support and information to families and individuals. • Fund research into the prevention and treatment of retinoblastoma. • Raise awareness among health professionals and the public. • Influence policy to improve services for patients.
Smile with Shiv
Raise awareness of Duchenne Muscular Dystrophy Raise as much money as possible so it can be given to those working to save Shiv’s life and thousands of other children with this horrific condition Work with the Duchenne community to ensure we have access to potential treatments as early as possible
Independent Cancer Patients' Voice
Independent Cancer Patients' Voice was started in July 2009 with a group of breast cancer patients led by Maggie Wilcox. They all had a keen interest in research and all felt strongly that they wanted to be a part of improving the outcome for future patients. With a range of professional backgrounds and of patient experiences, most of the original members had already been involved with breast cancer charities and the NCRI Breast Clinical Study Group. They felt that there was a need for a patient-led organisation to bring the views and experience of cancer patients and their families and carers into the cancer research community. And so, ICPV was born – to provide a forum for learning and debate through which patients could have an effective independent voice in research.
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.