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.
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.
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).
UKATPA
The UK ATTR Amyloidosis Patients’ Association (UKATPA) is a charity that was founded in 2017 by a group of UK patients with transthyretin (TTR) systemic amyloidosis (ATTR). We are supported by the consultant physicians of the UK NHS National Amyloidosis Centre (NAC).
Myrovlytis Trust
The Myrovlytis Trust is a charity founded in 2007 to transform the outlook for rare conditions. With an initial focus on Birt-Hogg-Dubé Syndrome and osteosarcoma, the trust strategically funds research directed towards new treatments. We want to ensure that patients gain access to the same state-of-the-art technologies, breakthroughs and therapies as those with more common disease. Driving research, providing support and improving outcomes for patients and their families affected by rare conditions
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.
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