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.
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.
Mind Over Cancer
Mind Over Cancer is a charity that supports the mental health of young people diagnosed with cancer between the ages of 0 and 29, as well as their families and support networks. It aims to promote and protect mental health by providing or assisting in the provision of counselling services and mental health support programs. The organization is made up of experts in cancer care and mental health who identified a lack of mental health provisions for young cancer patients. It offers mental health support, counselling, drop-in services, support programs, and online support groups across East Anglia. The charity also engages in advocacy, fundraising, and community support activities. It has a registered charity number 1192034 and is committed to supporting young people and their families through their cancer journey.
Action Parkinson asbl
Action Parkinson asbl is a patient advocacy organization based in Brussels, Belgium, dedicated to supporting individuals with Parkinson's disease. The organization provides information, support services, and advocacy activities to improve the quality of life for patients. It offers patient education resources, support groups, and organizes activities and events to raise awareness and promote research. The organization collaborates with healthcare professionals, researchers, and other stakeholders to advance understanding and treatment of Parkinson's disease. It maintains a website with comprehensive information on symptoms, causes, diagnosis, and treatment options, and actively engages in policy advocacy and community outreach. Action Parkinson is a patient advocacy organization based in Brussels, Belgium, dedicated to supporting individuals with Parkinson's disease. The organization provides information, advocacy, and support services for patients and their families. It promotes awareness of Parkinson's disease, offers educational resources, and facilitates multidisciplinary care involving neurologists, physiotherapists, speech therapists, occupational therapists, psychologists, social workers, and pharmacists. The organization collaborates with various partners, including healthcare providers and community groups, to improve the quality of life for those affected. It engages in advocacy activities to influence health policies and supports research initiatives related to Parkinson's disease. The organization maintains a website, social media presence, and publishes reports and brochures to inform the public and patients. It was established in 2019 and operates primarily in Belgium, with a physical headquarters in Brussels and activities in Ixelles.
Fabry International Network
Since Fabry disease is a rare genetic disorder, and since there are thousands of rare diseases, it’s hard for individual patients and caregivers to be heard. Therefore, when striving for better care and cure for Fabry patients, we need them to join forces and speak out. That’s where FIN comes in: an independent and vibrant network of Fabry patient associations whose purpose is to collaborate, communicate and promote best practice to support those affected by Fabry disease. We back 60 patient organizations in 57 countries. We connect health professionals and we ally with industry partners. We envision a world where every single person affected by Fabry disease has the best quality of life possible through early diagnosis, treatment and cure. Our mission, therefore, is to empower Fabry patients all over the world. FIN is a non-profit organisation registered in The Netherlands. The administrative support is based in Belgium. The Board of Directors meet regularly either online or face-to-face. In addition, they hold regular meetings with the industry partners and medical advisors.
Cancer Research UK
Patient advocacy organization at Cancer Research UK
Dravet Foundation
We are committed to carrying out our activity in a TRANSPARENT manner, promoting HONESTY and INTEGRITY in all our actions. We look to the future through INNOVATION, through the development of new avenues of research.
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.
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