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Discover support groups and communities where people share experiences, answer questions, and help each other navigate life with your condition.
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Featured Communities
Browse our curated list of patient advocacy groups and support networks making a difference today.
OGsupport.uk
<h1>Support Group for Oesophageal and Gastric Patients</h1> <p>We are a patient support group for Oesophageal-Gastric cancer patients, running online and face-to-face support groups.</p> <p>Please contact the local organiser for details.</p> <h2>Location and Meetings</h2> <p>Guildford - In-person meetings are held at The Holiday Inn, Egerton Road, Guildford</p> <h3>Who Can Attend?</h3> <ul> <li>Current and former oesophageal or stomach cancer patients</li> <li>Their carers</li> <li>Loved ones</li> </ul>
Young Epilepsy
Young Epilepsy is a charitable organization dedicated to supporting children and young people with epilepsy. They work to ensure their voices are heard, support them in education and daily life, and advance research into epilepsy causes and treatments. The organization campaigns for children's rights to healthcare and education, provides resources, and supports families and professionals involved in epilepsy care. They coordinate and fund research, offer diagnostic assessments, and develop tailored support services. Young Epilepsy also engages in advocacy, policy work, and community support initiatives to improve the quality of life for young people with epilepsy.
Fight Bladder Cancer
Fight Bladder Cancer is a UK-based charity founded and run by bladder cancer survivors and their families. It supports anyone affected by bladder cancer, raises awareness, supports medical research, and campaigns for policy change to improve bladder cancer treatments. Fight Bladder Cancer is a charitable organization dedicated to supporting individuals affected by bladder cancer through education, advocacy, research, and patient support services. They provide resources for patients, carers, and healthcare professionals, including informational materials, support groups, and campaigns to raise awareness about bladder cancer. The organization also engages in policy advocacy, collaborates with medical and research institutions, and promotes early detection and treatment options. Their activities include publishing reports, conducting research, and organizing community events to improve patient outcomes and increase public understanding of bladder cancer.
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.
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.
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 Power of Community
Navigating a health condition is easier when you have the right support. Here's what you can find.
Shared Experiences
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Practical Information
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Emotional Support
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Advocacy & Awareness
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