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
PKD Charity
Founded in 2000, we’re the first and only UK charity solely dedicated to improving the lives of an estimated 70,000 individuals and their families affected by polycystic kidney disease (PKD) in the UK. PKD is a range of life-threatening inherited conditions that can cause kidney failure and affect other organs in the body such as the liver, brain, heart and bowels. Most people with PKD live with an uncertain prognosis, intermittent pain and infections, and then have to undergo life-saving dialysis or transplant in their 50s. A few babies have a rare form of PKD which results in death during pregnancy or shortly after birth; the surviving children often have to have either a kidney or liver transplant before the age of 10. We provide reliable, accredited information, advice and personalised support. We raise awareness of the burden of PKD, both clinical and psychosocial. We fund research aimed at understanding more about PKD and the discovery of therapies that will improve quality and longevity of life.
Maggie's
Maggie's provides free cancer support and information in centres across the UK and online. They offer professional staff, help with money worries, support for friends and family, support groups, courses and workshops, and resources for managing emotions, practical challenges, symptoms and side effects, and social aspects of living with cancer. They also provide specific support for carers and those dealing with bereavement. Their services aim to help people live well with cancer. Maggie's is a cancer support organization providing free support services to individuals affected by cancer, including children, young people, and their families. They offer individual support, family support, support groups, psychology sessions, and signposting to other organizations. Their services are available at Maggie's centres across the UK and internationally. They also provide educational resources, advocacy activities, and community engagement. Maggie's is committed to supporting children and young people affected by cancer, offering tailored support and resources for teachers and group leaders. The organization is based in Glasgow, Scotland, and operates in multiple countries. It was established in 1995. Maggie's is a registered charity in Scotland with charity number SC024414.
Pancreatic Cancer Canada
Pancreatic Cancer Canada is dedicated to raising awareness, supporting patients and families, funding research, and advocating for improved treatments and early detection of pancreatic cancer. The organization provides patient and family support services, educational resources, and hosts events and fundraisers across Canada. It aims to increase survival rates through education, advocacy, and research funding. The organization is based in Toronto, Ontario, and operates nationwide, engaging in public awareness campaigns, clinical research support, and policy advocacy. It collaborates with healthcare providers, researchers, and community partners to advance pancreatic cancer care and research. Pancreatic Cancer Canada is a patient advocacy organization dedicated to providing support, raising awareness, and improving outcomes for individuals affected by pancreatic cancer. They offer educational resources, support services, advocacy campaigns, and information on treatment options and research. The organization engages in public awareness initiatives such as Pancreatic Cancer Awareness Month and collaborates with partners like Wellspring and AstraZeneca. They maintain a presence on social media platforms including Facebook, Twitter, Instagram, and YouTube. Their contact information includes a phone number, email, and physical address in Toronto, Canada. They focus on supporting patients and families through various programs, educational materials, and peer support, and are involved in advocacy and research activities.
The Orphan Disease Center
Research and funding for orphan diseases is grossly unmet. ODC provides technological and educational resources, identifies funding opportunities, and fosters therapeutic development and innovative research.
Muscle Help Foundation
The Muscle Help Foundation (MHF) is a registered charity dedicated to transforming the lives of children and young adults living with Muscular Dystrophy through the delivery of Muscle Dreams — unique, life-changing experiences that foster hope, joy, and community. Established to support individuals affected by muscular dystrophy, MHF organizes and funds a variety of programs including Muscle Dreams, community outreach, and support services. The organization collaborates with healthcare providers, research institutions, and corporate partners to advance research, advocacy, and patient support. MHF's mission is to deliver 657 Muscle Dreams across the UK, each representing a life-changing experience for every muscle in the human body, empowering beneficiaries and their families. The foundation actively engages in advocacy campaigns, educational initiatives, and partnerships to raise awareness and improve quality of life for those with muscular dystrophy. With a dedicated team of staff, volunteers, and trustees, MHF strives to be a leader in the muscular dystrophy community, fostering hope, resilience, and inclusion.
Fragile Society
The Fragile X Society was formed in 1990 by families whose children had just been diagnosed with Fragile X Syndrome. At that time there were no facilities to support and inform families about any aspect of Fragile X. The charity has since grown to consist of a team of dedicated employees and volunteers, supporting thousands of individuals and families.