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.
Hope for Hypothalamic Hamartomas
Hope for Hypothalamic Hamartomas is dedicated to supporting research into hypothalamic hamartomas (HH), a rare brain disorder characterized by lesions in the ventral hypothalamic region. The organization funds and awards research grants, facilitates international symposia, and collaborates with leading medical and research institutions worldwide. Their research initiatives include genomic profiling, functional MRI studies, animal model development, and genetic research to better understand HH etiology, diagnosis, and treatment options. They actively support scientific exchange through conferences and publish research articles. The organization also engages in advocacy, provides educational resources, and partners with medical professionals and institutions to advance HH research and treatment.
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.
Batten Disease Family Association
The BDFA’s mission is to enable everyone who is affected by Batten disease to live life to the full and secure the care and support they need until we find a cure. The BDFA offers informed guidance and supports families and professionals who work with them as well as actively increasing awareness of the disease and funding future research to identify potential therapies and ultimately a range of cures. The BDFA works across the rare disease sector to influence change in policy and processes as a collective voice.
Colorectal Cancer Alliance
To empower a nation of allies who work with us to provide support for patients and families, caregivers, and survivors; to raise awareness of preventive measures; and inspire efforts to fund critical research.
Cancerresearchuk
Cancer Research UK is the UK’s largest cancer charity that funds and conducts world-class research, provides reliable public information about cancer, influences policy, and supports clinical trials and drug development. It raises money through donations, events and retail to fund scientists, clinicians and infrastructure aimed at preventing, diagnosing and treating cancer and improving patient outcomes.
Muscle Help
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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: 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