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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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.
Angelman UK
AngelmanUK is a United Kingdom-based support group. The trustees are all volunteers with direct experience of Angelman Syndrome either as parents or relatives of children or adults with AS. We also have a panel of experts who are able to answer and advise on more complex questions. Many of these experts are recognised worldwide in their fields of expertise relating to Angelman Syndrome.
Acrodysostosis Support and Research
Acrodysostosis Support and Research is a charitable organization that provides educational resources and information about acrodysostosis for both patients and healthcare professionals. The Resources section offers diagnostic and management leaflets for professionals, an accessible What is acrodysostosis? guide in web and medical formats, information on disorders related to acrodysostosis, imagery illustrating distinctive features, and a hub for news, stories, and latest research. The site also links to team, blog, and fundraising content, indicating ongoing community involvement and support for research and awareness.
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.
Arbeitskreis der Pankreatektomierten e. V.
The Arbeitskreis der Pankreatektomierten e. V. (AdP) is a self-help organization founded in 1976, dedicated to supporting patients with pancreatic diseases, especially pancreatic cancer. It aims to promote health and rehabilitation for those who have undergone partial or total pancreatectomy, as well as non-operated pancreatic disease patients. The organization provides current information, facilitates experience exchange, and conducts educational work. It has over 1,550 members and collaborates with medical professionals and organizations. The AdP offers support for diagnosis, therapy, and follow-up, and advocates for early detection and research in pancreatic diseases. It is based in Bonn, Germany, and is supported by the German Cancer Aid. The Arbeitskreis der Pankreatektomierten e. V., also known as ADP e.V., is a patient self-help organization based in Bonn, Germany. It focuses on supporting individuals who have undergone pancreatic surgery, providing resources, advocacy, and community support. The organization offers informational documents, support networks, and educational materials for patients and their families. It engages in activities such as maintaining a forum, hotline, and distributing downloadable resources. The ADP e.V. collaborates with medical professionals and other organizations to improve patient care and awareness of pancreatic diseases. Its activities include advocacy campaigns, patient education initiatives, and supporting research collaborations. The organization is committed to empowering patients through information and community engagement, aiming to improve quality of life and treatment outcomes for those affected by pancreatic conditions.
Childhood Interstitial Lung Disease Foundation
The Child Lung Foundation is a charity supporting children affected by childhood Interstitial Lung Disease (chILD). Established in 2010, it provides resources, support groups, and promotes research development. The organization aims to improve diagnosis, treatment, and quality of life for children with chILD, and offers educational resources, patient support services, and advocacy activities. It collaborates with medical professionals, researchers, and patient families to advance understanding and care of rare pediatric lung diseases.
Baggy Trousers UK
<p>Baggy Trousers UK is a non-profit organisation saving lives by raising awareness of the signs and symptoms and providing vital support to those impacted by testicular cancer</p> Contact page for Baggy Trousers UK, a registered charity in England and Wales focused on Testicular Cancer Awareness. The site features a contact form, donation prompt, and social media channels. Charity No. 1160724. Baggy Trousers UK is a cancer charity based in the North West of England founded by Jack Broadley in 2014. Its aims are to (1) promote and protect the physical and mental health of sufferers of testicular cancer, (2) provide financial assistance, support, education and practical advice to those affected by testicular cancer, and (3) advance the education of the general public in all areas relating to testicular cancer. The organization delivers awareness talks and showcases awareness exhibitions/stands in public and corporate settings, distributing self-help materials (leaflets, posters and step-by-step checking cards). It provides financial and peer support to men directly affected by testicular cancer via telephone, email, social media and a monthly peer support group. Primary contact support includes a phone line and email for peer support, and the charity runs a monthly peer support group.
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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