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.
Batten Disease Family Association
The BDFA’s mission is to enable everyone who is affected by Batten disease to live life to the full and secure the care and support they need until we find a cure. The BDFA offers informed guidance and supports families and professionals who work with them as well as actively increasing awareness of the disease and funding future research to identify potential therapies and ultimately a range of cures. The BDFA works across the rare disease sector to influence change in policy and processes as a collective voice.
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.
ALK Positive
ALK Positive Lung Cancer (UK) is a registered charity (1181171) established by patients, their families and friends. We are a community from different backgrounds and walks of life - each with our own individual story. Established in 2018, our purpose is to extend the overall survival and quality of life of ALK-positive lung cancer patients across the UK.
Association for Glycogen Storage Disease (UK) Limited
We help individuals and families affected by Glycogen Storage Disease (GSD) by putting people in contact, providing information and support, publishing a magazine and holding conferences, workshops, courses and family events.
Lung Cancer Research Foundation
The mission of the Lung Cancer Research Foundation (LCRF) is to improve lung cancer outcomes by funding research for the prevention, diagnosis, treatment and cure of lung cancer.