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
OUTpatients
<p>Live Through This exists to support and advocate for our Lesbian, Gay, Bisexual, Transgender, Intersex and Queer communities when they are affected by cancer. Our goal is to help patients, survivors, partners and caregivers feel welcome and supported in cancer services. Through peer support, education, and bespoke resource production, it is our mission to transform cancer care into a more inclusive environment for everyone.</p>
Melanoma UK
At Melanoma UK, we believe it is vital to proactively use evidence in our advocacy work. An increasing proportion of patients are highly sophisticated in their research and understanding of evidence, and we are matching this movement. Examples include participation in health technology appraisal meetings (NICE and SMC), presenting clinically validated information on our website, authoring publications, engaging with our own panel of medical experts, and supporting patient-centric initiatives. Ultimately, all these initiatives are designed to benefit and support patients, which has been Melanoma UK's mission since its foundation.
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.
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.
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.
Annabelle's Challenge
Annabelle's Challenge is a charity focused on supporting individuals affected by vascular Ehlers-Danlos syndrome (vEDS). The organization provides support programs, awareness campaigns, research funding, and professional guidance. It aims to improve quality of life for patients and families, promote research and medical understanding, and advocate for better healthcare and support services. The charity also hosts conferences, supports patient stories, and collaborates with NHS services and other professional organizations to advance knowledge and care for vEDS. Annabelle's Challenge is a patient advocacy organization dedicated to supporting individuals with vascular Ehlers-Danlos syndrome (vEDS). It provides resources, support groups, educational materials, and advocacy for patients and families affected by vEDS. The organization aims to improve awareness, facilitate research, and enhance patient care through collaboration with healthcare professionals and the community. It offers a helpline, educational resources, emergency preparedness tools, and opportunities for involvement in research and outreach activities. Annabelle's Challenge also promotes self-advocacy, mental health support, and access to medical information to empower patients in managing their condition.