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.
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.
Bardet-Biedl Syndrome UK
Bardet-Biedl Syndrome UK (BBS UK) is a registered charity established in 1993, supporting individuals with Bardet-Biedl Syndrome, their families, and carers in the UK. It is a user-led organization represented by adults with BBS and parents of children with BBS. The organization's aims include preserving and protecting health, promoting welfare, and advancing education about BBS. BBS UK supports over 700 people diagnosed with BBS, along with their families and professionals involved in care and support. The organization offers various programs including advice services, clinics, conferences, support groups, and educational resources. It also engages in advocacy, research, and policy activities to improve health outcomes and understanding of BBS. Bardet-Biedl Syndrome UK (BBS UK) is a registered charity established in 1993, supporting individuals with Bardet-Biedl Syndrome, their families, and carers in the UK. It is a user-led organization represented by adults with BBS and parents of children with BBS. The organization's aims include preserving and protecting health, promoting welfare, advancing education about BBS, supporting over 700 people diagnosed with BBS, and fostering understanding, confidence, independence, self-advocacy, and social connections. BBS UK offers various programs such as advice services, clinics, conferences, support groups, educational booklets, newsletters, and fundraising activities. The organization also engages in advocacy, research, and policy work, maintains a website with extensive resources, and has a team of officers, trustees, and staff dedicated to its mission.
Matthews Friends
We support patients, families and professionals by providing information, training, research and grants to develop Ketogenic services and support systems.
Contact
We were founded in the 1970s by families of disabled children, who recognised that even if their child’s conditions were different, they shared a common experience – of being a family with a disabled child. They understood how important it is to support each other. A lot has changed since then but some things haven’t changed nearly enough. There is a desperate lack of services and support for the 620,000 parents in the UK who care for a disabled child. As a result, families face a huge range of challenges and many feel isolated and alone. Coping with extra financial costs and practical challenges can put an enormous strain on daily life, with families more likely to face emotional issues, stress and anxiety. We are here for all families with disabled children – supporting families, bringing families together and helping families take action for others. Our vision is that families with disabled children feel valued and are strong, confident and able to make the decisions that are right for them.
MPS Society
The MPS Society is a UK-based charity dedicated to transforming lives through support, research, and awareness for individuals affected by MPS, Fabry, and related lysosomal diseases. It provides professional support, patient resources, advocacy, and funding for research into treatments and cures. The organization offers a range of support services including mental health, bereavement, and community support, and actively engages in research, clinical trials, and policy advocacy. It maintains a website with extensive resources, publishes reports and educational materials, and collaborates with healthcare professionals and research institutions. The Society aims to improve diagnosis, treatment, and quality of life for patients and families affected by these rare conditions.
Lymphoma Action
Lymphoma Action is a registered charity in England and Wales (1068395) and in Scotland (SC045850). It provides information, support, and advocacy for people affected by lymphoma. The organization offers a range of patient support services, educational resources, and campaigns to raise awareness and improve patient outcomes. It collaborates with healthcare professionals and policymakers to influence policy and advance research in lymphoma. The organization maintains a website with extensive resources, including self-management tools, wellbeing videos, and clinical trial information. It operates in the UK and has a global reach through online resources and social media platforms.
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.
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