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
Multiple Sclerosis Society (MS Society UK)
Multiple sclerosis (MS) is a neurological condition - that means it affects your nerves. You get it when your immune system isn’t working properly. Your immune system normally protects you by fighting off infection, but in MS it attacks your nerves by mistake. Your nerves control lots of different parts of your body. That’s why you can get MS symptoms in many parts of your body. It’s also why everyone’s MS is different. Once diagnosed, MS stays with you for life, but treatments and specialists can help you to manage the condition and its symptoms. We're here to help you live well with your MS and fund research to stop MS for good.
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.
Pancreatic Cancer Action
What we do: Early diagnosis Subscribe Taking Action in Scotland The team at Pancreatic Cancer Action Current vacancies Contact Us Support from Trusts and Foundations Financial information Your privacy About Pancreatic Cancer Action We are the only UK charity that specifically focuses on improving pancreatic cancer survival rates through early diagnosis in everything we do. We raise awareness of the symptoms and risk factors of pancreatic cancer across the year. Join us by raising awareness of pancreatic cancer and by sharing your story! Founded by a pancreatic cancer survivor, Ali Stunt, who proves that survival is possible, Pancreatic Cancer Action’s vision is a day when everyone is diagnosed early and survives pancreatic cancer. Quite simply, we know that pancreatic cancer can be detected early, and as long as we are here and continue to be supported, we will do all we can do to make sure this happens more and more.
The FACS Syndrome Association
Welcome to our website. FACSA is a support group for families and children who have been affected by AEDs during pregnancy and have a diagnosis of FACS Syndrome (FVS)
KBG Syndrome Foundation
HOME KBG SYNDROME RESOURCES ABOUT THE FOUNDATION CONTACT US PARTNERS VOLUNTEERING Our all-volunteer board has a deep respect and gratitude for the community volunteers working to build awareness for KBG syndrome. Learn about how you can help. The KBG Syndrome Foundation was founded in June 2015 as a affiliate of The Epilepsy Association of Utah after CEO and President, Annette Maughan's son was diagnosed with the condition. While speaking with the geneticist, she and her husband, Glenn, were told to use social media and online searches to learn more and find support for his newly found diagnosis. They thought, why USE social media when someone needs to BE the social media outlet for families and researchers alike.
Team Lopez Foundation
The Team Lopez Foundation was incorporated in memory of Alex Lopez who was tragically lost to pancreatic Cancer. Our mission to honour Alex’s legacy is to raise funds for Pancreatic Cancer Research. We have established with Sydney University the Alex Lopez PhD Scholarship in Pancreatic Cancer. The scholarship named in loving memory of Alex, plays a pivotal role in attracting talented PhD students from around the world to improve the survival rates of pancreatic cancer patients. Over the last 15 years, University of Sydney clinicians based in their teaching hospital on the Royal North Shore campus, have become leaders in treating pancreatic cancer. Patients treated by their team survive almost twice as long after diagnosis compared to the average Australian pancreatic cancer patient treated elsewhere. At the University of Sydney, as part of the Kolling Institute at the Royal North Shore Hospital, provides the research foundations that the team refine into best practice.