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.
Why PatientGroups.ai?
Verified Communities
We vet every organization to ensure you find safe, legitimate support networks and advocacy groups.
Global Reach
Access support groups from around the world, or find local communities near you that speak your language.
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Built with patients in mind, prioritizing your privacy, ease of use, and meaningful connections.
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.
GIST Cancer UK
GIST Cancer UK is a registered charity in England and Wales (1129219). It provides confidential support for people living with GIST cancer and their loved ones. The organization offers various resources including publications, support groups, helpline, and patient support activities. It collaborates with GIST specialists and has a Medical Advisory Board. The organization is involved in patient advocacy, education, and research support. It maintains a website with information on treatment, side effects, and patient stories. The physical address is 3 Phillips Grove, Yatton Keynell, Chippenham, Wiltshire N14 7FA. Contact email: admin@gistcancer.org.uk. Phone: 0300 400 0000. It is active on social media platforms including Facebook, YouTube, Instagram, LinkedIn, and Twitter.
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.
Behçet's UK
Behçet's UK is a patient advocacy organization dedicated to supporting individuals affected by Behçet’s disease. They provide information, support services, and promote research to improve diagnosis and treatment. The organization operates a helpline, offers patient education resources, and runs support groups and events across the UK. They are involved in advocacy activities to raise awareness and influence policy related to Behçet’s disease. The organization maintains a website with comprehensive information and links to social media platforms. They also coordinate with national centers of excellence for specialized care. Behçet's UK is a charity dedicated to supporting individuals affected by Behçet's disease, a rare and complex autoimmune condition. The organization provides patient support, promotes research, and raises awareness about Behçet's disease. It offers various programs including support groups, educational resources, and advocacy activities. Behçet's UK collaborates with medical professionals and research institutions to improve patient care and outcomes. The organization also hosts conferences, surveys, and community events to engage with patients and healthcare providers. It maintains a helpline, social media presence, and partnerships with other health and advocacy groups. The charity is committed to advancing understanding and treatment of Behçet's disease through research and policy influence.
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.
Dancing Eye Syndrome Support Trust
The Dancing Eye Syndrome Support Trust, established in 1997, provides mutual support and encouragement to parents of children diagnosed with Dancing Eye Syndrome (Opsoclonus-Myoclonus Syndrome). It offers a platform for parents to connect, share experiences, and access information through meetings and newsletters. The trust also produces educational resources for families and supports research and awareness efforts related to the condition. It arranges meetings for members, produces informational materials, and provides contact details for neurology specialists for adults with childhood-onset OMS. Providing support and information to families of children with Dancing Eye Syndrome. OMAS or Dancing Eye Syndrome is a rare autoimmune condition affecting young children, characterized by rapid eye movements, jerking movements, and loss of balance. Most children are diagnosed around 18 months, with a prevalence of 1 in 5 million children worldwide. The syndrome is often triggered by a neuroblastoma tumor or viral infection. Symptoms include opsoclonus, myoclonus, ataxia, speech difficulties, sleep problems, behavioral issues, hypotonia, and vomiting. Treatment involves immunotherapy, corticosteroids, IVIg, rituximab, and possibly surgery for tumors. The cause varies by age, with neuroblastoma in young children and idiopathic or viral causes in older children. The organization was established in 1997, providing support, raising awareness, and hosting conferences. Contact: support@dancingeyes.org.uk, Tel: 07746 129950. The trust is involved in fundraising, awareness campaigns, and community support.
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.
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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