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.
Ataxia and Me
A non-profit organisation founded by a patient, and run by patients, helping to maximise the patient voice within the medical, health and pharma community
FOP Friends
FOP Friends is a registered charity in England and Wales dedicated to supporting individuals affected by Fibrodysplasia Ossificans Progressiva (FOP). The organization provides information, advocacy, support services, and funding for research to find a cure for FOP. They engage in public awareness campaigns, host events, and collaborate with medical and research institutions worldwide. Their activities include patient education, clinical trial support, and community building for those living with FOP. The charity also advocates for policy change and medical research to improve the lives of people with FOP. FOP Friends is the UK’s only charity dedicated to supporting families living with Fibrodysplasia Ossificans Progressiva (FOP). It helps families and patients, funds research for treatment and cure, and raises awareness to prevent misdiagnosis. The organization collaborates with medical specialists, other patient organizations, and pharmaceutical companies. It receives no government or NHS funding, relying solely on fundraising and grants. The charity provides trusted information, educational resources, support services, and advocacy activities. It also offers clinical guidelines, support for living with FOP, and emergency procedures. The organization is involved in research, clinical trials, and policy advocacy. It maintains a website with extensive resources, including downloadable leaflets, guides, and contact information for medical professionals. It is registered as a charity in England and Wales (#1147704).
Rarebeacon
Beacon for rare diseases is a UK-based charity that hosts events and community activities for the rare disease community. The organization offers events such as patient group trainings, masterclasses, and conferences, and maintains an events calendar featuring both online and in-person formats. They emphasize accessibility of events and state that events are designed for all stakeholders in the rare disease community, with at least one target audience being rare disease patient groups. The site footer provides the organization’s address in Cambridge, charity and company registration details, and a contact email for the projects team (projects@rarebeacon.org). Rarebeacon, now known as Beacon for Rare Diseases, is a UK-based organization dedicated to supporting and advocating for individuals with rare diseases. Founded in 2012, it provides resources, research, and community support to improve the lives of patients and their families. The organization engages in public education, policy advocacy, and collaborates with research institutions. It offers patient support programs, educational resources, and hosts events and campaigns to raise awareness about rare diseases. Its activities include publishing impact reports, facilitating patient and caregiver networks, and promoting research and drug development in the rare disease field. The organization operates primarily in the UK but has a global outreach through its online platforms and partnerships.
Leukaemia Care
Leukaemia Care is the UK’s leading leukaemia charity. For over 50 years, we have been dedicated to ensuring that everyone affected receives the best possible diagnosis, information, advice, treatment and support.
Action Bladder Cancer UK
Action Bladder Cancer UK (ABC UK) is a charity organization dedicated to raising awareness of bladder cancer, improving early diagnosis, and supporting research and patient support activities. They provide patient stories, educational resources, and support groups. The organization is involved in advocacy, research funding, and clinical trials. They operate primarily in the UK, with a physical address at 6 Trull Farm Buildings, Tetbury, Gloucestershire, GL8 8SQ. The charity was established to address the late detection of bladder cancer and aims to improve survival rates. They have a registered charity number 1164374. The organization engages in policy advocacy, supports patient education, and collaborates with healthcare professionals and researchers. Action Bladder Cancer UK (ABC UK) is a charity organization dedicated to supporting patients with bladder cancer, raising awareness, funding research, and providing educational resources. They operate primarily within the UK, with activities including patient support groups, research grants, educational programs, and advocacy campaigns. The organization is involved in clinical trial support, research collaborations, and policy engagement. They maintain a website with resources for patients and professionals, and have active social media presence on Twitter and Facebook. The charity was established in 2015 and is registered under charity number 1164374. They offer various support services, educational materials, and participate in policy discussions related to bladder cancer.
AMMF
AMMF (The Alan Morement Memorial Fund) is a UK-based charity dedicated to supporting research, raising awareness, and providing support for patients with cholangiocarcinoma (CCA). It develops comprehensive guidelines for diagnosis and treatment, funds research projects, and offers educational resources for patients and healthcare professionals. AMMF collaborates with international centers and advocacy groups to improve access to care and promote clinical research. The organization also engages in policy advocacy, hosts conferences, and maintains a network of advisors and experts in the field of liver and biliary cancers.
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