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Featured Support Groups
Connect with these highly rated patient advocacy groups that are making a difference in their communities
Bardet-Biedl Syndrome UK
Bardet-Biedl Syndrome UK (BBS UK) is a registered charity established in 1993, supporting individuals with Bardet-Biedl Syndrome, their families, and carers in the UK. It is a user-led organization represented by adults with BBS and parents of children with BBS. The organization's aims include preserving and protecting health, promoting welfare, and advancing education about BBS. BBS UK supports over 700 people diagnosed with BBS, along with their families and professionals involved in care and support. The organization offers various programs including advice services, clinics, conferences, support groups, and educational resources. It also engages in advocacy, research, and policy activities to improve health outcomes and understanding of BBS. Bardet-Biedl Syndrome UK (BBS UK) is a registered charity established in 1993, supporting individuals with Bardet-Biedl Syndrome, their families, and carers in the UK. It is a user-led organization represented by adults with BBS and parents of children with BBS. The organization's aims include preserving and protecting health, promoting welfare, advancing education about BBS, supporting over 700 people diagnosed with BBS, and fostering understanding, confidence, independence, self-advocacy, and social connections. BBS UK offers various programs such as advice services, clinics, conferences, support groups, educational booklets, newsletters, and fundraising activities. The organization also engages in advocacy, research, and policy work, maintains a website with extensive resources, and has a team of officers, trustees, and staff dedicated to its mission.
Myotubular Trust
The Myotubular Trust is a UK-based charity dedicated to supporting research, raising awareness, and providing support for individuals affected by myotubular and centronuclear myopathies. It aims to accelerate treatments and improve quality of life through funding research projects, fostering collaborations, and engaging with the community. The organization also offers educational resources, patient registries, and advocacy campaigns to promote understanding and drive progress in the field.
EGFR Positive UK
EGFR Positive UK is a charity dedicated to empowering patients diagnosed with EGFR mutation positive Non-Small Cell Lung Cancer (NSCLC), primarily at Stage 4. The organization aims to inform and involve patients in their treatment decisions, drawing on the European Cancer Organisation’s Code of Cancer Practice. It provides resources, support, and advocacy for individuals affected by EGFR+ lung cancer, including educational materials, patient support services, and information about treatment options. EGFR Positive UK also engages in research dissemination, policy advocacy, and community support activities. The organization is a member of Lung Cancer Europe and collaborates with various UK and international lung cancer organizations. It offers conferences, campaigns, and a good practice guide to improve patient care and outcomes.
Rett UK
Rett UK is the only UK charity that provides professional support to people living with Rett syndrome across the UK. Rett UK was founded in 1985 round a kitchen table by Yvonne Milne MBE. Since then we have grown to be the leading provider of information to not only families but also medical professionals new to the world of Rett syndrome.
Rarebeacon
Beacon for rare diseases is a UK-based charity that hosts events and community activities for the rare disease community. The organization offers events such as patient group trainings, masterclasses, and conferences, and maintains an events calendar featuring both online and in-person formats. They emphasize accessibility of events and state that events are designed for all stakeholders in the rare disease community, with at least one target audience being rare disease patient groups. The site footer provides the organization’s address in Cambridge, charity and company registration details, and a contact email for the projects team (projects@rarebeacon.org). Rarebeacon, now known as Beacon for Rare Diseases, is a UK-based organization dedicated to supporting and advocating for individuals with rare diseases. Founded in 2012, it provides resources, research, and community support to improve the lives of patients and their families. The organization engages in public education, policy advocacy, and collaborates with research institutions. It offers patient support programs, educational resources, and hosts events and campaigns to raise awareness about rare diseases. Its activities include publishing impact reports, facilitating patient and caregiver networks, and promoting research and drug development in the rare disease field. The organization operates primarily in the UK but has a global outreach through its online platforms and partnerships.
The Glaucoma Foundation
The Glaucoma Foundation is a non-profit organization dedicated to supporting research, education, and advocacy related to glaucoma. It aims to improve the lives of those affected by glaucoma through funding innovative research, providing patient education resources, and promoting awareness campaigns. The foundation collaborates with medical professionals, researchers, and patient communities to advance understanding and treatment of glaucoma. It also organizes events, webinars, and support programs to empower patients and healthcare providers. The foundation's mission includes fostering scientific discovery, improving diagnostic and therapeutic options, and ensuring access to quality eye care for all individuals at risk of or living with glaucoma.