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
Epilepsy Action
Find out what it means to be a national charity committed to supporting a better life for everyone affected by epilepsy.
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.
Brainstrust
Brainstrust is a brain tumour charity dedicated to providing support, information, and resources for individuals affected by brain tumours. They offer patient guides, practical help, support videos, and campaigns to raise awareness and improve quality of life for patients and their families. The organization also engages in research, collaborates with healthcare professionals, and advocates for better treatment options. Their services include a 24/7 helpline, educational resources, support groups, and community events. Brainstrust aims to empower patients with knowledge and confidence to navigate their diagnosis and treatment journey, reduce fear and isolation, and promote research and policy change to improve outcomes.
DKMS Foundation
DKMS is a patient-focused organization dedicated to fighting blood cancer through stem cell donation, patient support, and advocacy. It operates in the UK and collaborates with various partners to facilitate blood stem cell transplants, provide patient support services, and promote awareness campaigns. The organization maintains a registry of donors, offers educational resources, and engages in research collaborations to improve treatment outcomes. DKMS also advocates for policy changes to enhance donor registration and access to treatments. It is involved in clinical trial support and works with regulatory bodies to ensure compliance and advance medical research. The organization is committed to increasing diversity in donor registries and supporting patients throughout their treatment journey.
Armenian Hematology Association
The Armenian Hematology Association (AHA) is a national society for specialists working in the field
The Ehlers Danlos Society
The Ehlers Danlos Society is a global organization dedicated to improving the lives of people with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). The society provides education, research funding, clinical resources, and advocacy to support patients, families, and healthcare professionals. It aims to increase awareness, promote diagnosis, and advance research to find better treatments and ultimately a cure for EDS and HSD. The society also offers support groups, patient stories, and community engagement initiatives to foster a strong network of individuals affected by these connective tissue disorders. The Ehlers Danlos Society is a patient advocacy organization dedicated to improving the lives of individuals with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). The organization focuses on research, education, support, and advocacy to raise awareness and improve diagnosis and management of these connective tissue disorders. It offers patient support programs, educational resources, and promotes research collaborations. The Society also engages in policy advocacy and provides a platform for patient stories and community engagement. It operates globally, with a focus on patient-centered initiatives, and collaborates with healthcare professionals, researchers, and other organizations to advance understanding and treatment of EDS and HSD.