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.
The Leukodystrophy Charity
Alex, The Leukodystrophy Charity is all about delivering high quality support, advice, knowledge and care for those affected by one of the leukodystrophies. The majority of these conditions cause progressive neurodegeneration, are largely untreatable and sadly terminal, and those affected deal with many common factors. Some of the less rare leukodystrophies already have established and reputable support groups providing excellent resources for sufferers and we signpost to these organisations and endeavour to work in partnership where possible. However, many of the very rare leukodystrophies have no support organisation working for them – Alex TLC focuses on the similarities caused by these conditions, embracing all affected within a community of Tender Loving Care.
Fight Bladder Cancer
Fight Bladder Cancer is a UK-based charity founded and run by bladder cancer survivors and their families. It supports anyone affected by bladder cancer, raises awareness, supports medical research, and campaigns for policy change to improve bladder cancer treatments. Fight Bladder Cancer is a charitable organization dedicated to supporting individuals affected by bladder cancer through education, advocacy, research, and patient support services. They provide resources for patients, carers, and healthcare professionals, including informational materials, support groups, and campaigns to raise awareness about bladder cancer. The organization also engages in policy advocacy, collaborates with medical and research institutions, and promotes early detection and treatment options. Their activities include publishing reports, conducting research, and organizing community events to improve patient outcomes and increase public understanding of bladder cancer.
Myhre Syndrome Foundation
The Myhre Syndrome Foundation is a nonprofit organization dedicated to supporting individuals with Myhre syndrome, advancing research, and providing resources and community support. They organize conferences, webinars, and provide educational materials to improve understanding and management of the condition. The foundation also collaborates with clinicians, researchers, and advocacy groups to promote awareness and develop targeted therapies. Their activities include patient and family support, medical guidance, research funding, and community engagement.
Pancreatic Cancer UK
Pancreatic Cancer UK is a charity dedicated to providing information, support, and advocacy for individuals affected by pancreatic cancer. They offer a range of publications, educational resources, and support services to help patients, families, and healthcare professionals. The organization actively engages in advocacy activities to influence policy and improve patient care. They collaborate with healthcare providers, researchers, and industry partners to advance research and clinical trials. Their mission is to improve outcomes and quality of life for people affected by pancreatic cancer through education, support, and advocacy. Pancreatic Cancer UK is a charity dedicated to supporting people affected by pancreatic cancer, funding research, and campaigning for change. They provide information, support services, and advocate for early detection and better treatment options. The organization also funds research projects into early detection and treatments, collaborates with research institutions, and engages in policy advocacy. They operate a support line, publish educational resources, and run campaigns to raise awareness. Their activities include supporting patients and families, funding research, influencing policy, and collaborating with healthcare professionals and researchers. They have a strong focus on improving outcomes for pancreatic cancer patients through research, advocacy, and support.
Cure Mito Foundation
The Cure Mito Foundation is a patient-led advocacy organization focused on Leigh syndrome and other mitochondrial diseases. It unites the global Leigh syndrome community to accelerate patient-centered research, treatments, and cures, operates the largest Leigh syndrome patient registry (400+ participants across 40+ countries), and provides resources and support to affected families worldwide.
Its On The Ball
It's on the Ball is a UK-based registered charity (charity number 1155510) focused on testicular cancer awareness, information, support, and fundraising. The organization provides contact channels for enquiries and support (email info@itsontheball.org and phone 01603 511707) and operates from Norwich, Norfolk, United Kingdom. Core activities include awareness campaigns, patient support resources, fundraising for change, volunteering opportunities, and storytelling/community engagement through its site sections (Testicular Cancer resources, Get Involved, Stories, News). It's On The Ball is a UK-based registered charity (charity number 1155510) focused on testicular cancer awareness, education, and patient support. The organization describes itself as working to raise awareness of testicular cancer and the importance of monthly self-checks, deliver awareness talks to schools, colleges, businesses and organisations around East Anglia, provide patient education resources (leaflets and information), and fundraise to support patients through awareness campaigns, support packs, and grants. Core activities include awareness campaigns (Awareness), patient support (Support), and fundraising initiatives (Fundraising). The site emphasizes patient advocacy through stories, support resources, and community events, including BeerPush fundraising campaigns and other community events. The organization invites donations, volunteers, and corporate support and maintains an active newsletter and events calendar. The content reflects ongoing engagement with the public and communities to improve early detection and patient support related to testicular cancer.
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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