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
Angelman UK
AngelmanUK is a United Kingdom-based support group. The trustees are all volunteers with direct experience of Angelman Syndrome either as parents or relatives of children or adults with AS. We also have a panel of experts who are able to answer and advise on more complex questions. Many of these experts are recognised worldwide in their fields of expertise relating to Angelman Syndrome.
Bowel Cancer UK
We’re the UK’s leading bowel cancer charity. We’re determined to save lives and improve the quality of life of everyone affected by bowel cancer. Our vision is a future where nobody dies of the disease.
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.
FOP Friends
FOP Friends is a registered charity in England and Wales dedicated to supporting individuals affected by Fibrodysplasia Ossificans Progressiva (FOP). The organization provides information, advocacy, support services, and funding for research to find a cure for FOP. They engage in public awareness campaigns, host events, and collaborate with medical and research institutions worldwide. Their activities include patient education, clinical trial support, and community building for those living with FOP. The charity also advocates for policy change and medical research to improve the lives of people with FOP. FOP Friends is the UK’s only charity dedicated to supporting families living with Fibrodysplasia Ossificans Progressiva (FOP). It helps families and patients, funds research for treatment and cure, and raises awareness to prevent misdiagnosis. The organization collaborates with medical specialists, other patient organizations, and pharmaceutical companies. It receives no government or NHS funding, relying solely on fundraising and grants. The charity provides trusted information, educational resources, support services, and advocacy activities. It also offers clinical guidelines, support for living with FOP, and emergency procedures. The organization is involved in research, clinical trials, and policy advocacy. It maintains a website with extensive resources, including downloadable leaflets, guides, and contact information for medical professionals. It is registered as a charity in England and Wales (#1147704).
Brain Tumour Research
We are the only national charity in the UK focused on finding a cure for all types of brain tumours through campaigning to increase the national investment in brain tumour research to £35 million per year, while fundraising to create a network of seven sustainable Brain Tumour Research Centres of Excellence across the UK.
Purple Our World
<p>The statistics around pancreatic cancer are heartbreaking, and quite frankly, frightening. At #PurpleOurWorld, our aim is to get the world talking about pancreatic cancer and ultimately change these horrible numbers. We want to turn our world purple!</p><p>The statistics around pancreatic cancer are heartbreaking. At #PurpleOurWorld, our aim is to get the world talking about pancreatic cancer and ultimately change these horrible numbers. We want to turn our world purple!</p> Purple Our World is a patient advocacy organization dedicated to raising awareness and funding for pancreatic cancer research. Founded in 2014, it aims to increase public understanding of pancreatic cancer symptoms, promote early detection, and support medical research initiatives. The organization collaborates with charities, government bodies, and corporate partners to amplify its impact. It organizes awareness campaigns, such as lighting landmarks purple, and engages with the community through social media, ambassador programs, and events. Purple Our World also advocates for policy change and increased research funding to improve survival rates and patient outcomes.