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
Childhood Tumour Trust
Childhood Tumour Trust is a growing charity whose aim is to bring children, young people and their families affected by Neurofibromatosis type 1 (NF1) together, (be it virtually at the moment), provide online parental support, campaign for better care & earlier diagnosis and to liaise with schools over special educational support.
Wolfram Syndrome UK
Wolfram Syndrome UK is a charity dedicated to supporting individuals affected by Wolfram Syndrome, raising awareness, funding research, and providing support and resources for patients and families. The organization works closely with hospitals, clinicians, and researchers to advance understanding and treatment of Wolfram Syndrome. It offers patient support programs, educational resources, and hosts conferences and clinical trials updates. The charity also advocates for policy change and collaborates with international organizations to improve care and research efforts.
MedicAlert
MedicAlert Foundation is a registered charity: 233705. It provides medical identification services, including emergency help lines, ID bracelets, and related support for individuals with medical conditions. The organization offers membership services, educational resources, and support for patients and their families. It collaborates with healthcare providers and emergency services to ensure rapid response in medical emergencies. The foundation also engages in advocacy for patient safety and awareness, and maintains a website with comprehensive information and resources. MedicAlert Foundation is a registered charity: 233705. It provides medical ID jewelry and services to help ensure vital health information is instantly available in emergencies. The organization offers membership services, protection programmes, and support for individuals with medical conditions or allergies. It collaborates with emergency services, healthcare professionals, and partners such as NHS, Lions, and Fundraising Regulator. The charity aims to improve safety and confidence for vulnerable populations, including those with dementia, autoimmune diseases, allergies, and other medical conditions. It maintains a website with educational resources, membership options, and donation opportunities. The organization is involved in public awareness campaigns, member stories, and community engagement. It also offers the Herbert Protocol scheme for at-risk individuals, with data retention policies and privacy safeguards in place.
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.
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.