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
Acrodysostosis Support and Research
Acrodysostosis Support and Research is a charitable organization that provides educational resources and information about acrodysostosis for both patients and healthcare professionals. The Resources section offers diagnostic and management leaflets for professionals, an accessible What is acrodysostosis? guide in web and medical formats, information on disorders related to acrodysostosis, imagery illustrating distinctive features, and a hub for news, stories, and latest research. The site also links to team, blog, and fundraising content, indicating ongoing community involvement and support for research and awareness.
Myeloma UK
Myeloma UK is a charity dedicated to improving the lives of people affected by myeloma through research, support, and education. It provides patient information, advocates for policy change, funds research, and offers support services including helplines, support groups, and educational resources. The organization collaborates with healthcare professionals and industry partners to enhance treatment and care for myeloma patients. It is involved in clinical trials, research publications, and maintains a website with extensive resources and community engagement initiatives. Myeloma UK is a registered charity No. SC026116, based at 22 Logie Mill, Beaverbank Business Park, Edinburgh, EH7 4HG, with contact number 0131 557 3332.
Lightning and Love Foundation
To raise awareness, advance scientific research through fundraising and advocacy, and find a cure for diseases caused from mutations in the THAP12 gene ultimately transforming the lives of those affected; and in turn helping change the landscape and providing knowledge and hope for all people living with ultra-rare diseases.
Cavernoma Society
The Cavernoma Society was set up in late 2018 and officially achieved its charity registration in July 2019. It has been created to support cavernoma patients, their families, carers, and friends, through the cavernoma journey. We're working towards a cure and better management for cavernoma, but in the meantime we can support you by offering guidance, reassurance, medical information, and counselling. We're member led, so we're constantly evolving our services and making sure we're delivering the best for you.
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.
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).