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
Fabry International Network
Since Fabry disease is a rare genetic disorder, and since there are thousands of rare diseases, it’s hard for individual patients and caregivers to be heard. Therefore, when striving for better care and cure for Fabry patients, we need them to join forces and speak out. That’s where FIN comes in: an independent and vibrant network of Fabry patient associations whose purpose is to collaborate, communicate and promote best practice to support those affected by Fabry disease. We back 60 patient organizations in 57 countries. We connect health professionals and we ally with industry partners. We envision a world where every single person affected by Fabry disease has the best quality of life possible through early diagnosis, treatment and cure. Our mission, therefore, is to empower Fabry patients all over the world. FIN is a non-profit organisation registered in The Netherlands. The administrative support is based in Belgium. The Board of Directors meet regularly either online or face-to-face. In addition, they hold regular meetings with the industry partners and medical advisors.
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.
Matthews Friends
We support patients, families and professionals by providing information, training, research and grants to develop Ketogenic services and support systems.
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.
Selbsthilfe Pankreaskarzinom
Selbsthilfe Pankreaskarzinom is an organization providing resources, information, and support for individuals affected by pancreatic cancer. They offer downloadable brochures on various topics related to pancreatic cancer, including disease information, treatment options, patient rights, and complementary medicine. The organization aims to educate, support, and advocate for patients and their families, promoting awareness and understanding of pancreatic cancer. They also facilitate community engagement through events like World Pancreatic Cancer Day and provide contact information for assistance and inquiries.
Pancreas Hope
Mobilise patients, families and friends to collect and share their testimonies, make themselves heard and understood. Inform members of ESPOIR PANCREAS and the general public about advances in treatment Raise public awareness of pancreatic cancer Represent patients on ad hoc committees