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
MEBO Research
MEBO’s Mission is to initiate research into rare genetic metabolic diseases, particularly those resulting in systemic, difficult to control body malodor and halitosis, including, but not limited to, Trimethylaminuria. Studies such as the "Dynamics of the Gut Microbiota in Idiopathic Malodor Production" and "MEBO Metabolic Profiling" are ground-breaking studies which explore innovative insight into conditions of malodor and/or PATM.
AMMF
AMMF (The Alan Morement Memorial Fund) is a UK-based charity dedicated to supporting research, raising awareness, and providing support for patients with cholangiocarcinoma (CCA). It develops comprehensive guidelines for diagnosis and treatment, funds research projects, and offers educational resources for patients and healthcare professionals. AMMF collaborates with international centers and advocacy groups to improve access to care and promote clinical research. The organization also engages in policy advocacy, hosts conferences, and maintains a network of advisors and experts in the field of liver and biliary cancers.
Barth Syndrome Foundation
The Barth Syndrome Foundation (BSF) is the only organization dedicated to saving lives around the world through education, advances in treatments, and finding a cure for Barth syndrome, a life-threatening genetic, multi-system disorder mostly affecting males. BSF provides vital information, credible resources, and supports research efforts to improve diagnosis, treatment, and quality of life for individuals with Barth syndrome. The foundation also advocates for regulatory approval of therapies, collaborates with healthcare providers and researchers, and offers community support and educational programs. The Barth Syndrome Foundation (BSF) is dedicated to saving lives around the world through education, advances in treatments, and finding a cure for Barth syndrome, a life-threatening genetic, multi-system disorder mostly affecting males. The foundation provides vital information, credible resources, and supports research initiatives. It engages in advocacy activities, offers patient and clinician resources, and fosters community support. The organization is involved in clinical trials, research funding, and policy advocacy. It maintains a comprehensive website with sections on research, family resources, diagnosis, and community engagement. The foundation also collaborates with international affiliates, partners, and medical advisory boards. It is committed to improving diagnosis, treatment, and quality of life for individuals with Barth syndrome and their families.
Contact
We were founded in the 1970s by families of disabled children, who recognised that even if their child’s conditions were different, they shared a common experience – of being a family with a disabled child. They understood how important it is to support each other. A lot has changed since then but some things haven’t changed nearly enough. There is a desperate lack of services and support for the 620,000 parents in the UK who care for a disabled child. As a result, families face a huge range of challenges and many feel isolated and alone. Coping with extra financial costs and practical challenges can put an enormous strain on daily life, with families more likely to face emotional issues, stress and anxiety. We are here for all families with disabled children – supporting families, bringing families together and helping families take action for others. Our vision is that families with disabled children feel valued and are strong, confident and able to make the decisions that are right for them.
Lymphoma Action
Lymphoma Action is a registered charity in England and Wales (1068395) and in Scotland (SC045850). It provides information, support, and advocacy for people affected by lymphoma. The organization offers a range of patient support services, educational resources, and campaigns to raise awareness and improve patient outcomes. It collaborates with healthcare professionals and policymakers to influence policy and advance research in lymphoma. The organization maintains a website with extensive resources, including self-management tools, wellbeing videos, and clinical trial information. It operates in the UK and has a global reach through online resources and social media platforms.
Spohn Cancer Support
SPOHNC is a vital resource for head and neck cancer patients. We have had an enormous positive impact on meeting the psychosocial needs of patients as well as preserving, restoring, and promoting physical and emotional health. SPOHNC is a foundation for patient and family education and awareness.