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.
Patient-Centric
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.
Epilepsy Action
Find out what it means to be a national charity committed to supporting a better life for everyone affected by epilepsy.
Supporting GIST Cancer Patients & Funding GIST Cancer Research
A support and information organization for people affected by GIST cancer. It offers help for patients and carers, shares information about treatments, and promotes research into cures.
Pitt Hopkins UK
In September 2013 the members of the Pitt Hopkins UK fundraising group knew of 33 cases of PTHS in the UK. In September 2014 we were in contact with at least 40. At our PTHS UK Day in July ’14, we heard that there were about 200 diagnosed people in the UK. This meant we had contact with about 1 in 5 of all cases already diagnosed in the UK. In June 2015 we had contact with over 60 families. Some of these new families came from the DDD study. In 2020 we have contact with about 100 families in the UK and Ireland and it is estimated there are 300 families diagnosed in the UK. We know there are many more families out there both diagnosed and undiagnosed. We hope to find them. If you are one of them please contact us.
FOP Friends
FOP Friends is a registered charity in England and Wales dedicated to supporting individuals affected by Fibrodysplasia Ossificans Progressiva (FOP). The organization provides information, advocacy, support services, and funding for research to find a cure for FOP. They engage in public awareness campaigns, host events, and collaborate with medical and research institutions worldwide. Their activities include patient education, clinical trial support, and community building for those living with FOP. The charity also advocates for policy change and medical research to improve the lives of people with FOP. FOP Friends is the UK’s only charity dedicated to supporting families living with Fibrodysplasia Ossificans Progressiva (FOP). It helps families and patients, funds research for treatment and cure, and raises awareness to prevent misdiagnosis. The organization collaborates with medical specialists, other patient organizations, and pharmaceutical companies. It receives no government or NHS funding, relying solely on fundraising and grants. The charity provides trusted information, educational resources, support services, and advocacy activities. It also offers clinical guidelines, support for living with FOP, and emergency procedures. The organization is involved in research, clinical trials, and policy advocacy. It maintains a website with extensive resources, including downloadable leaflets, guides, and contact information for medical professionals. It is registered as a charity in England and Wales (#1147704).
Spohn Cancer Support
SPOHNC is a vital resource for head and neck cancer patients. We have had an enormous positive impact on meeting the psychosocial needs of patients as well as preserving, restoring, and promoting physical and emotional health. SPOHNC is a foundation for patient and family education and awareness.
Action Duchenne
Save the Date for the Action Duchenne Community Summit 2026 (Previously known as Annual International Conference)
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.
Start Your Journey
Take the first step toward connection and support. Search for patient groups that match your needs today.
Start Your Search