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.
Usher Syndrome Ireland
Usher Syndrome Ireland is a charity founded by people with Usher syndrome, for people with Usher syndrome. It aims to support, inform, empower, and build a community for those affected by Usher syndrome. The organization raises awareness, funds research, advocates for affected individuals, and creates a supportive community. It provides information, support, and advocacy for people with Usher syndrome and their families. Usher Syndrome Ireland is a patient organization dedicated to providing information, support, and resources for individuals and families affected by Usher syndrome. They offer educational materials, support services, and advocacy to improve quality of life and access to care. The organization collaborates with various health and social services to promote awareness and research. They maintain a website with extensive resources, including research news, patient registries, and community support programs. Their mission is to empower those affected by Usher syndrome through education, support, and advocacy, fostering a strong community and advancing research efforts.
Cavernoma Alliance UK
Cavernoma Alliance UK (CAUK) is a charity organization dedicated to supporting individuals affected by cavernoma. It provides patient support services, educational resources, advocacy campaigns, and conducts research. The organization engages in policy advocacy, offers a helpline, support groups, and runs awareness and fundraising activities. It maintains a website with extensive information on cavernoma, including facts, leaflets, and research updates. CAUK collaborates with medical professionals and has an active social media presence. It is a registered charity with the number 1197257, based in Oxfordshire, UK, and operates in multiple countries through its online presence.
Epilepsy Sparks
Epilepsy Sparks is a platform providing information, research, and resources related to epilepsy, neurology, neuroscience, and genetics. It aims to support individuals affected by epilepsy and related neurological conditions through education, research involvement, and advocacy. The organization is part of Media Evolution Ltd, based in London, UK. It offers various resources including facts, glossaries, research projects, and conferences. The website emphasizes that information is not a substitute for personal medical advice and encourages consultation with qualified clinicians.
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.
British Lymphology Society
The British Lymphology Society is a dynamic and innovative body providing a strong professional voice and support for those involved in the care and treatment of people with lymphoedema and related lymphatic disorders, including lipoedema. The Society seeks to achieve high standards of care and equitable access to treatment across the UK and promotes early detection and intervention and, where appropriate, screening and prevention.