Find Your Patient Support Community
Discover support groups and communities where people share experiences, answer questions, and help each other navigate life with your condition.
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Verified Communities
We vet every organization to ensure you find safe, legitimate support networks and advocacy groups.
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Access support groups from around the world, or find local communities near you that speak your language.
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How It Works
Finding the right support group is simple. We've made it easy for you.
Search Your Condition
Enter your health condition or diagnosis. Our smart search instantly finds relevant support organizations.
Explore Communities
Review detailed profiles of advocacy groups, including their mission, resources, and contact info.
Connect & Get Support
Reach out directly to join communities, access resources, or get involved with groups that feel right for you.
Featured Communities
Browse our curated list of patient advocacy groups and support networks making a difference today.
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.
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>
British Lymphology Society
The British Lymphology Society is a dynamic and innovative body providing a strong professional voice and support for those involved in the care and treatment of people with lymphoedema and related lymphatic disorders, including lipoedema. The Society seeks to achieve high standards of care and equitable access to treatment across the UK and promotes early detection and intervention and, where appropriate, screening and prevention.
Tuberous Sclerosis Association
The Tuberous Sclerosis Association (TSA) was launched in 1977 with a membership of 50 families and funds of just £25. We have grown from a round robin support letter to a professional organisation providing support to families affected by Tuberous Sclerosis Complex (TSC) across the UK. For our five year strategy of 2019-2023, our aim is to ‘REACH more people and drive more REseArCH.’ The TSA is a registered charity with three charitable objectives: To support individuals affected by TSC, together with their families or carers To encourage and support research into the causes and management of TSC To provide education and information We look to our past to retain our community spirit, but drive forward by pushing the boundaries of what a small and dedicated team is capable of achieving.
Hrvatska udruga leukemija i limfomi (HULL)
<p>The association works with the aim of helping patients suffering from hematological diseases, developing new research programs and treatment methods, and to this end undertakes the following activities:</p><ul><li>Organizes the treatment of patients suffering from leukemia, lymphoma, and related diseases.</li><li>Collects donations, and develops and implements programs to help patients suffering from leukemia, lymphoma, and related diseases.</li><li>Encourages new methods of treatment, and limits professional and financial assistance for these programs.</li><li>Supports programs to help patients and their families.</li><li>Supports research work in the field of etiology, therapy, and treatment of leukemia, lymphoma, and related hematological diseases.</li><li>Develops unrelated bone marrow transplantation programs in the Republic of Croatia.</li><li>Organizes seminars and consultations, and distributes information from these meetings to health and scientific institutions.</li></ul>
International Prader-Willi Syndrome Organisation
Since 1991 IPWSO has supported national PWS associations, as well as people with PWS, their families and the professionals who work with them. Our vision is a world where people with PWS and their families receive the services and support they need to fulfil their potential and achieve their goals. We are working to achieve this goal by uniting the global PWS community to collectively find solutions to the challenges of the syndrome and to support and advocate for people with PWS and their families, PWS associations, and professionals who work with people with PWS.
The Power of Community
Navigating a health condition is easier when you have the right support. Here's what you can find.
Shared Experiences
Connect with people who truly understand what you're going through. Share your story in a safe, supportive environment.
Practical Information
Get real-world advice about managing your condition, navigating healthcare, and finding resources that actually help.
Emotional Support
Find comfort in a community that cares. Whether you need to vent, celebrate, or just feel heard, we're here.
Advocacy & Awareness
Many groups work to raise awareness, fund research, and improve care. Your voice can make a difference.
PatientGroups.co Podcast
Conversations with leaders, founders, and advocates driving change in the patient advocacy ecosystem.
Patient Group Spotlight: The Swallows with Chris Curtis
Featuring The Swallows
Chris Curtis shares his head and neck cancer journey, the mission behind The Swallows, and why patient-led support and access must improve.
Patient Group Spotlight: Burning Nights CRPS Support with Victoria Abbott-Fleming
Featuring Burning Nights CRPS Support
Victoria Abbott-Fleming shares her CRPS journey, the mission behind Burning Nights, and why patient voices must shape treatment and policy.
Patient Group Spotlight: The MVA Society & The Ultra-Rare Journey
Featuring MVA Society
A deep dive into the challenges and triumphs of Mosaic Variegated Aneuploidy advocacy with founder Jonathan Bracey.
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