Helping patients find information when they are discovering their disease
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Featured Support Groups
Connect with these highly rated patient advocacy groups that are making a difference in their communities
Max Appeal
Resource Library page for Max Appeal. Provides access to all of Max Appeal's literature, professional papers, and useful web pages and links around the world. Encourages participation in or understanding current research into 22q; directs visitors to Library, Research, and Useful Links sections to learn about 22q and related resources.
EURORDIS-Rare Diseases Europe
EURORDIS-Rare Diseases Europe is a non-profit alliance of patient organizations in Europe dedicated to empowering, supporting, and advocating for people living with rare diseases. It coordinates network activities, policy initiatives, information and support for patients and families, and collaborates with partners to advance rare disease research and policy.
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.
Digestive Cancers Europe
Digestive Cancers Europe is a patient advocacy organization dedicated to improving the lives of individuals affected by digestive cancers through advocacy, education, research, and support initiatives. They work to raise awareness, influence policy, and provide resources and support to patients and caregivers across Europe. The organization collaborates with healthcare professionals, researchers, and policymakers to advance understanding and treatment of digestive cancers, including colorectal, gastric, liver, pancreatic, and other rare cancers. They also focus on promoting early detection, personalized medicine, and access to innovative therapies. Their activities include publishing educational materials, organizing awareness campaigns, supporting research projects, and engaging in policy advocacy to improve patient outcomes and healthcare systems.
Cancer Support UK
<p>We provide practical and emotional support to people with cancer, during and after the treatment period.</p><p>We support people with all kinds of cancer across the UK. Our services are designed and delivered by people who have experienced cancer themselves – to improve the experience of others.</p> Cancer Support UK is a UK-based charity dedicated to supporting cancer patients and their families throughout the cancer journey. It emphasizes emotional and practical support, including free Cancer Coach programs (peer group support, digital learning, and Focus Forwards workshops) for adults who have completed cancer treatment. The organization offers Cancer Kits and workplace training, signposting, and educational resources, and invites donations and involvement through volunteering and referrals. The site notes impact such as helping 4,952 people in 2020 and highlights storytelling and shared experiences to raise awareness of its services. Core activities include running Cancer Coach programs (peer groups online or by phone, digital learning, and focused workshops), providing educational resources and materials (Cancer Types, Signposting, Resources), offering cancer-related patient support services, and broader fundraising and outreach efforts.
Colorectal Cancer Alliance
To empower a nation of allies who work with us to provide support for patients and families, caregivers, and survivors; to raise awareness of preventive measures; and inspire efforts to fund critical research.