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.
Rareminds
Rareminds is a registered charity in England and Wales, no. 1205120. Its mission is to provide affordable, timely access to highly specialised counselling for the rare disease community, and campaign for recognition of the importance of specialist mental health support by informing policy, practice, and promoting standards of excellence. It is partially funded by donations and sponsorship via unrestricted grants. Rareminds operates independently of companies and does not endorse any products. It does not have editorial or clinical control over content, activities, or service provision. The organization supports emotional wellbeing, counselling, training, consultancy, and awareness activities for the rare disease community.
Cure CLCN4
Cure CLCN4 is a registered charity in England and Wales (1190344). It focuses on providing resources, support, and research related to CLCN4-related neurodevelopmental disorder. The organization offers patient and family resources, research funding, and community engagement activities. It maintains a patient registry, conducts research, and collaborates with scientific and medical communities to advance understanding and treatment of CLCN4 conditions. The organization also engages in advocacy, education, and awareness campaigns to support affected families and promote scientific research.
It's in the Bag Cancer Support
It's in the Bag is a charity dedicated to supporting men diagnosed with testicular cancer through awareness, support services, fundraising, and survivor programs. They organize events like Test Fest and The Testicular Ball to raise funds and awareness. The organization provides educational resources, support lines, survivor toolkit afternoons, and collaborates with NHS hospitals and other charities. They focus on early detection, survival, and empowering survivors. Their activities include campaigning for regular self-checks, providing information packs, and running awareness campaigns such as 'Don't Bottle It' and 'Match Fit'. They have a strong social media presence and partnerships with Bristol-based companies and national sponsors. The charity is registered with the Charity Commission, operates mainly in the UK, and has a dedicated team of staff and volunteers. Their mission is to save lives through early detection and to improve the quality of life for those affected by testicular cancer.
IPOPI
IPOPI is an international non-profit association registered in Belgium; it aims to improve the lives of people with primary immunodeficiencies (PIDs) worldwide. The organization operates through a strategic plan and network of member organizations to advocate for early diagnosis and optimal care, PID awareness, and stakeholder collaboration. IPOPI conducts work on PID-related awareness, early diagnosis and care, NMO support within NMOs, and provides patient-focused resources and tools (Leaflets, publications, and the PID Life Index). It maintains corporate sponsor relationships and programmatic initiatives such as early diagnosis and care, PID awareness, and NMO-related support. IPOPI (International Patient Organisation for Primary Immunodeficiency) is an organization dedicated to improving the lives of patients with primary immunodeficiencies worldwide. It engages in advocacy, education, and support activities, collaborates with stakeholders, and promotes awareness and early diagnosis of PIDs. IPOPI maintains a network of experts, produces educational materials such as leaflets, and is involved in policy and research initiatives. The organization is based in Belgium, with a focus on global impact, and has partnerships with corporate sponsors. It provides resources for patients and healthcare professionals, and actively participates in policy and clinical development activities.
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.
Instituto Oncoguia
Instituto Oncoguia is a Brazilian non-governmental organization that informs, supports and defends the rights of people affected by cancer. Through a multichannel portal and projects (patient and family spaces, clinical research panel, public policy advocacy, educational materials and tools like Radar do Câncer and Atlas CCC), it provides reliable information, peer support and advocacy to patients across Brazil.
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