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.
Fight Bladder Cancer
Fight Bladder Cancer is a UK-based charity founded and run by bladder cancer survivors and their families. It supports anyone affected by bladder cancer, raises awareness, supports medical research, and campaigns for policy change to improve bladder cancer treatments. Fight Bladder Cancer is a charitable organization dedicated to supporting individuals affected by bladder cancer through education, advocacy, research, and patient support services. They provide resources for patients, carers, and healthcare professionals, including informational materials, support groups, and campaigns to raise awareness about bladder cancer. The organization also engages in policy advocacy, collaborates with medical and research institutions, and promotes early detection and treatment options. Their activities include publishing reports, conducting research, and organizing community events to improve patient outcomes and increase public understanding of bladder cancer.
Myhre Syndrome Foundation
The Myhre Syndrome Foundation is a nonprofit organization dedicated to supporting individuals with Myhre syndrome, advancing research, and providing resources and community support. They organize conferences, webinars, and provide educational materials to improve understanding and management of the condition. The foundation also collaborates with clinicians, researchers, and advocacy groups to promote awareness and develop targeted therapies. Their activities include patient and family support, medical guidance, research funding, and community engagement.
Medics4RareDiseases Ltd
Medics4RareDiseases Ltd is a Charitable Incorporated Organisation (CIO) registered in England & Wales. It is a charitable organization focused on raising awareness and supporting rare disease communities. The organization is funded by donations and sponsorship, and it does not provide clinical services or medical referrals. Its activities include advocacy, awareness campaigns, and community engagement in the field of rare diseases.
Chordoma UK
Over the last few years, Professor Flanagan’s research team and colleagues have taken tumours from patients treated at RNOH (with their consent and ethical approval), and 5 chordoma cell lines have been established from these tumours. 3 other cell lines have been generously donated from other researchers. This means that for the first time, a reasonable number of cell lines are available to screen against a large number of drugs / compounds (1000-2000), some of which are already used in the treatment of other tumours, and some of which are in development. By studying the effect of 100s of drugs on the chordoma cell lines we should be able to identify what induces the expression of brachyury. If can identify this/these, we have other potential targets to which drugs can be developed. We will also investigate if we can ‘silence’ brachyury in the chordoma cells using a virus. Research using these cell lines is has recently commenced and it is hoped that the outcome of this work will have an impact on the way all chordoma patients are treated worldwide.
UKATPA
The UK ATTR Amyloidosis Patients’ Association (UKATPA) is a charity that was founded in 2017 by a group of UK patients with transthyretin (TTR) systemic amyloidosis (ATTR). We are supported by the consultant physicians of the UK NHS National Amyloidosis Centre (NAC).