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
Cure CLCN4
Cure CLCN4 is a registered charity in England and Wales (1190344). It focuses on providing resources, support, and research related to CLCN4-related neurodevelopmental disorder. The organization offers patient and family resources, research funding, and community engagement activities. It maintains a patient registry, conducts research, and collaborates with scientific and medical communities to advance understanding and treatment of CLCN4 conditions. The organization also engages in advocacy, education, and awareness campaigns to support affected families and promote scientific research.
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.
EURORDIS-Rare Diseases Europe
EURORDIS-Rare Diseases Europe is a non-profit alliance of patient organizations in Europe dedicated to empowering, supporting, and advocating for people living with rare diseases. It coordinates network activities, policy initiatives, information and support for patients and families, and collaborates with partners to advance rare disease research and policy.
Arbeitskreis der Pankreatektomierten e. V.
The Arbeitskreis der Pankreatektomierten e. V. (AdP) is a self-help organization founded in 1976, dedicated to supporting patients with pancreatic diseases, especially pancreatic cancer. It aims to promote health and rehabilitation for those who have undergone partial or total pancreatectomy, as well as non-operated pancreatic disease patients. The organization provides current information, facilitates experience exchange, and conducts educational work. It has over 1,550 members and collaborates with medical professionals and organizations. The AdP offers support for diagnosis, therapy, and follow-up, and advocates for early detection and research in pancreatic diseases. It is based in Bonn, Germany, and is supported by the German Cancer Aid. The Arbeitskreis der Pankreatektomierten e. V., also known as ADP e.V., is a patient self-help organization based in Bonn, Germany. It focuses on supporting individuals who have undergone pancreatic surgery, providing resources, advocacy, and community support. The organization offers informational documents, support networks, and educational materials for patients and their families. It engages in activities such as maintaining a forum, hotline, and distributing downloadable resources. The ADP e.V. collaborates with medical professionals and other organizations to improve patient care and awareness of pancreatic diseases. Its activities include advocacy campaigns, patient education initiatives, and supporting research collaborations. The organization is committed to empowering patients through information and community engagement, aiming to improve quality of life and treatment outcomes for those affected by pancreatic conditions.
Fondation A.R.C.A.D
A.R.CA.D Foundation is a French research and patient advocate non-profit charity founded in 2006. It works on different levels nationally and internationally to raise awareness, provide education and advocate for the prevention, treatment and cure of gastrointestinal cancers.
Osteogenesis Imperfecta Foundation
The mission of the OI Foundation is to improve the quality of life for those living with osteogenesis imperfecta through research, education, awareness and mutual support. The Osteogenesis Imperfecta Foundation, Inc., is a registered 501(c)(3) non-profit organization. Tax ID: 23-7076021. Information on this website may be reproduced provided a full citation of the source is given.