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
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.
Bowel Cancer UK
We’re the UK’s leading bowel cancer charity. We’re determined to save lives and improve the quality of life of everyone affected by bowel cancer. Our vision is a future where nobody dies of the disease.
Barth Syndrome Foundation
The Barth Syndrome Foundation (BSF) is the only organization dedicated to saving lives around the world through education, advances in treatments, and finding a cure for Barth syndrome, a life-threatening genetic, multi-system disorder mostly affecting males. BSF provides vital information, credible resources, and supports research efforts to improve diagnosis, treatment, and quality of life for individuals with Barth syndrome. The foundation also advocates for regulatory approval of therapies, collaborates with healthcare providers and researchers, and offers community support and educational programs. The Barth Syndrome Foundation (BSF) is dedicated to saving lives around the world through education, advances in treatments, and finding a cure for Barth syndrome, a life-threatening genetic, multi-system disorder mostly affecting males. The foundation provides vital information, credible resources, and supports research initiatives. It engages in advocacy activities, offers patient and clinician resources, and fosters community support. The organization is involved in clinical trials, research funding, and policy advocacy. It maintains a comprehensive website with sections on research, family resources, diagnosis, and community engagement. The foundation also collaborates with international affiliates, partners, and medical advisory boards. It is committed to improving diagnosis, treatment, and quality of life for individuals with Barth syndrome and their families.
Chordoma UK
Over the last few years, Professor Flanagan’s research team and colleagues have taken tumours from patients treated at RNOH (with their consent and ethical approval), and 5 chordoma cell lines have been established from these tumours. 3 other cell lines have been generously donated from other researchers. This means that for the first time, a reasonable number of cell lines are available to screen against a large number of drugs / compounds (1000-2000), some of which are already used in the treatment of other tumours, and some of which are in development. By studying the effect of 100s of drugs on the chordoma cell lines we should be able to identify what induces the expression of brachyury. If can identify this/these, we have other potential targets to which drugs can be developed. We will also investigate if we can ‘silence’ brachyury in the chordoma cells using a virus. Research using these cell lines is has recently commenced and it is hoped that the outcome of this work will have an impact on the way all chordoma patients are treated worldwide.
Help 4 HD International
Help 4 HD International is an international patient advocacy organization focused on Huntington's disease. The website presents a mission, resources, and programs to support HD patients and families. It hosts a diverse range of events each year, including Awareness Days, symposia, walks, Casino Night Out, and Cocktails for a Cure, and provides access to resources via a Resource Database. The site also features The Huntington's Post and Help 4 HD Live, indicating educational and community-facing content and events to inform and engage patients, caregivers, and professionals. Help 4 HD International is a nonprofit organization dedicated to educating the world about Huntington’s disease. It provides resources, support, and advocacy for patients, caregivers, and families affected by HD. The organization offers various programs including resource databases, educational materials, support groups, and advocacy campaigns. It engages in policy work, clinical trial support, and research collaborations. Help 4 HD also produces publications, reports, and educational brochures to raise awareness and provide information about Huntington’s disease. The organization is involved in community outreach, law enforcement awareness, and caregiver support initiatives. It maintains a website with social media presence on YouTube, Facebook, Instagram, and Twitter. It was founded in 2010 and operates internationally, with a focus on education, support, and advocacy.
