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.
Lightning and Love Foundation
To raise awareness, advance scientific research through fundraising and advocacy, and find a cure for diseases caused from mutations in the THAP12 gene ultimately transforming the lives of those affected; and in turn helping change the landscape and providing knowledge and hope for all people living with ultra-rare diseases.
Chromosome 18 Europe
Chromosome 18 Registry and Research Society (Europe) is a charitable organization (Charity Number SC040399) associated with the Chromosome 18 Registry and Research Society. It facilitates a European community for families, friends, and members affected by Chromosome 18-related conditions, coordinating governance through a Management Committee and communicating developments ahead of its Annual General Meeting. The event described on this page is an informal, family-friendly gathering at the Glasgow Science Centre intended to connect attendees, share experiences, and discuss the organisation’s future direction, with feedback invited ahead of the next AGM. The site notes an international component, including a visit by several families from the US Chromosome 18 Registry and Research Society to Scotland.
Independent Cancer Patients' Voice
Independent Cancer Patients' Voice (ICPV) is a charity registered by the Charity Commission for England and Wales. It focuses on patient advocacy, support, and engagement in cancer research. The organization aims to involve patients in research design, policy, and clinical trials, providing a platform for patient voices to influence cancer research and treatment. ICPV organizes courses, conferences, and advocacy activities to empower patients and improve cancer care through active participation and collaboration with researchers and clinicians.
Albinism Fellowship
Albinism Fellowship is a UK-based charity dedicated to supporting people affected by albinism and their families. Its mission includes raising awareness, providing information, advocating for individuals with albinism, and offering resources and community engagement through events, education, and membership. Core activities evidenced on the site include Understanding Albinism and FAQ for Albinism as educational resources, Other useful organisations as a resource hub, hosting events such as the Albinism Fellowship Conference, providing a contact channel via Get in Touch, and maintaining a presence through Membership, Podcast, Baby Boxes, and social media. The organization operates within the United Kingdom and has registered charity numbers in England & Wales (1196004) and Scotland (SC009443).
PCB Foundation
The PBC Foundation is the only UK organisation exclusively dedicated to providing support and information to those affected by PBC. PBC (Primary Biliary Cholangitis) is a long-term, auto-immune condition which affects the liver.
MDS UK Patient Support Group
MDS UK Patient Support Group provides support, information, and advocacy for individuals in the UK diagnosed with Myelodysplastic Syndromes (MDS) or Chronic Myelomonocytic Leukaemia (CMML), and their caregivers. They offer online support meetings, educational resources, real patient stories, and facilitate access to specialist centers. The organization also engages in fundraising activities to raise awareness, advocate for improved treatments, and drive research into MDS and CMML. MDS UK Patient Support Group provides comprehensive information, support, and resources for patients, families, and caregivers affected by Myelodysplastic Syndromes (MDS). They offer educational materials, patient booklets, factsheets, support meetings, and guidance on living with MDS. The organization also engages in advocacy, supports clinical trials, and provides resources for traveling and managing the disease. Their activities include raising awareness, patient education, and supporting research collaborations. They are a registered charity in the UK, with contact details including a phone number and email, and maintain a website with extensive patient resources.
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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