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
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.
IFOPA
To fund research to find a cure for FOP while supporting, connecting and advocating for individuals with FOP and their families, and raising awareness worldwide.
CDH UK
CDH UK is a registered charity in England and Wales (no. 1106065) and Scotland (no. SC042410). It focuses on supporting research and providing support for individuals affected by Congenital Diaphragmatic Hernia (CDH). The organization offers patient support, advocacy, and research funding to improve outcomes and awareness of CDH. It engages in public education, supports families, and collaborates with medical professionals to advance treatment and understanding of CDH. CDH UK is a registered charity focused on Congenital Diaphragmatic Hernia (CDH). The organization provides comprehensive information about CDH, including diagnosis, what to expect during pregnancy and birth, post-natal care, surgical repair, possible outcomes, and emotional support. They offer various support services such as counselling, practical help (Home 2 Hospital, Help 4 Home, Help 4 Holidays), ongoing support, and resources for transition of care. CDH UK is actively involved in research, collaborating with researchers, PhD students, and healthcare professionals on research programmes and conducting in-house studies and surveys. They also publish research articles and provide educational materials like information booklets, magazines, and explainer graphics for patients, families, and carers. The charity is supported by patrons and a medical advisory panel, and engages in fundraising activities to support its mission.
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.
Help 4 HD International
Help 4 HD International is an international patient advocacy organization focused on Huntington's disease. The website presents a mission, resources, and programs to support HD patients and families. It hosts a diverse range of events each year, including Awareness Days, symposia, walks, Casino Night Out, and Cocktails for a Cure, and provides access to resources via a Resource Database. The site also features The Huntington's Post and Help 4 HD Live, indicating educational and community-facing content and events to inform and engage patients, caregivers, and professionals. Help 4 HD International is a nonprofit organization dedicated to educating the world about Huntington’s disease. It provides resources, support, and advocacy for patients, caregivers, and families affected by HD. The organization offers various programs including resource databases, educational materials, support groups, and advocacy campaigns. It engages in policy work, clinical trial support, and research collaborations. Help 4 HD also produces publications, reports, and educational brochures to raise awareness and provide information about Huntington’s disease. The organization is involved in community outreach, law enforcement awareness, and caregiver support initiatives. It maintains a website with social media presence on YouTube, Facebook, Instagram, and Twitter. It was founded in 2010 and operates internationally, with a focus on education, support, and advocacy.
Myotubular Trust
The Myotubular Trust is a UK-based charity dedicated to supporting research, raising awareness, and providing support for individuals affected by myotubular and centronuclear myopathies. It aims to accelerate treatments and improve quality of life through funding research projects, fostering collaborations, and engaging with the community. The organization also offers educational resources, patient registries, and advocacy campaigns to promote understanding and drive progress in the field.