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
The Leukodystrophy Charity
Alex, The Leukodystrophy Charity is all about delivering high quality support, advice, knowledge and care for those affected by one of the leukodystrophies. The majority of these conditions cause progressive neurodegeneration, are largely untreatable and sadly terminal, and those affected deal with many common factors. Some of the less rare leukodystrophies already have established and reputable support groups providing excellent resources for sufferers and we signpost to these organisations and endeavour to work in partnership where possible. However, many of the very rare leukodystrophies have no support organisation working for them – Alex TLC focuses on the similarities caused by these conditions, embracing all affected within a community of Tender Loving Care.
Lasag
London Asbestos Support Awareness Group (LASAG) is a UK charity focused on asbestos-related information and support. The site provides information on asbestos diseases (via 'Asbestos Diseases'), benefits and compensation (including legal compensation under 'Legal Compensation'), referral services, 'Support Groups and Events', news and campaigns, fundraising, and 'Meet the team' information. Primary contact is support@lasag.org.uk; main website is https://www.lasag.org.uk. The charity is registered in England and Wales with charity number 1174543. The registered address is Farthings, Bridle Lane, Loudwater, Rickmansworth, Hertfordshire, WD3 4JQ. Phone line is 0808 278 2515.
Contact
We were founded in the 1970s by families of disabled children, who recognised that even if their child’s conditions were different, they shared a common experience – of being a family with a disabled child. They understood how important it is to support each other. A lot has changed since then but some things haven’t changed nearly enough. There is a desperate lack of services and support for the 620,000 parents in the UK who care for a disabled child. As a result, families face a huge range of challenges and many feel isolated and alone. Coping with extra financial costs and practical challenges can put an enormous strain on daily life, with families more likely to face emotional issues, stress and anxiety. We are here for all families with disabled children – supporting families, bringing families together and helping families take action for others. Our vision is that families with disabled children feel valued and are strong, confident and able to make the decisions that are right for them.
Pancreatic Cancer Europe
Pancreatic Cancer Europe (PCE) is a European multi-stakeholder platform that aims to bring together experts from across Europe, including academics, physicians, policymakers, patient groups, and journalists, with the shared goal of improving care for pancreatic cancer patients. The organization engages in advocacy, research, awareness campaigns, and policy work to address gaps in treatment, promote innovative therapies, and ensure equitable access to care. PCE collaborates with industry partners, healthcare professionals, and patient organizations to advance research, support patient needs, and influence healthcare policies at the European level. The organization also maintains a network of members, including patient advocates, medical professionals, and research institutions, and participates in European and international cancer and gastroenterology organizations.
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.
Butterfly Thyroid Cancer Trust
Butterfly Thyroid Cancer Trust is the first national supporter of patients with Thyroid Cancer. As a group dedicated solely to the support of patients with Thyroid Cancer we can offer fellow thyroid cancer patients who wish to join us the following: Use of the dedicated helpline to speak to someone who has had the disease. E-mail and telephone contact with group members to share experiences A "buddy" to help you through the stages of surgery, Radioiodine treatment and follow up Access to reliable up-to-date written information about the disease Access to a group member in clinic at the Northern Centre for Cancer Care (NCCC), Freeman Hospital