Helping patients find information when they are discovering their disease
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Featured Support Groups
Connect with these highly rated patient advocacy groups that are making a difference in their communities
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.
Anthony Nolan
Anthony Nolan is a UK charity that saves lives through stem cell transplants. They recruit people to the stem cell register, conduct research into stem cell transplants, and provide support and information for patients and their families dealing with blood cancers and blood disorders. Their work includes influencing policy for change, raising awareness, and offering a wide range of educational and support resources.
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.
The Lymphoedema Support Network
The Lymphoedema Support Network (LSN) is a registered charity and the UK’s national patient support charity for those living with or affected by lymphoedema.’ The Lymphoedema Support Network takes the lead role in supporting and empowering people with lymphoedema by providing a high standard of information and promoting self-help. Since its inception in 1991, when there was very little information or help available for patients, the LSN has evolved into an independent and influential charity. As a charity run by people with lymphoedema, the LSN has a real understanding of the lived experience of the condition which it uses to inform its work.
Medics4RareDiseases Ltd
Medics4RareDiseases Ltd is a Charitable Incorporated Organisation (CIO) registered in England & Wales. It is a charitable organization focused on raising awareness and supporting rare disease communities. The organization is funded by donations and sponsorship, and it does not provide clinical services or medical referrals. Its activities include advocacy, awareness campaigns, and community engagement in the field of rare diseases.
Cystinosis Foundation UK
The Cystinosis Foundation UK aims to: Provide support. We aim to provide support to all diagnosed with cystinosis, their families and relatives. Provide information. We shall provide relevant, accessable and up to date information about the disorder, as well as advice on specialist sources of help for new symptoms developing in patients. Publish newsletters. Up to date newsletters containing relevant information for patients and supporters will be produced regularly. Organise or participate in conferences relevant to cystinosis. We aim to publicise cystinosis to the medical profession (particularly paediatric consultants) so that those born with cystinosis are identified as soon as possible. Support research into the treatment of cystinosis. Work with cystinosis related charities worldwide to help co-ordinate research support, maintain awareness of new treatments and seek to understand more about metabolic disorders in general.