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.
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Verified Communities
We vet every organization to ensure you find safe, legitimate support networks and advocacy groups.
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Access support groups from around the world, or find local communities near you that speak your language.
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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.
Debbie Fund
The Debbie Phillips Cervical Cancer Research Fund (Debbie Fund) is a fund within University College London Hospitals Charity. It funds a dedicated cervical cancer research programme at the UCL Cancer Institute and supports awareness and fundraising efforts. A fund within University College London Hospitals Charity dedicated to cervical cancer research. The Debbie Fund operates as part of UCLH Charity and is associated with cervical cancer research funding and advocacy efforts. The Debbie Fund is owned and operated by Debbie Fund and is connected to privacy and consent terms on the site. The Debbie Fund is dedicated to funding research into cervical cancer, aiming to develop new treatments and find a cure. It was established in memory of Debbie Phillips, who died of cervical cancer. The fund supports research at University College London (UCL) and collaborates with other universities. The organization has raised over £1 million through events like marathons, balls, and community activities. It focuses on cervical cancer, with research on genomics, antibody development, and clinical trials. The fund also engages in public awareness, advocacy, and fundraising campaigns. It is part of University College London Hospitals Charity, with registered charity number 1165398.
Cure CLCN4
Cure CLCN4 is a registered charity in England and Wales (1190344). It focuses on providing resources, support, and research related to CLCN4-related neurodevelopmental disorder. The organization offers patient and family resources, research funding, and community engagement activities. It maintains a patient registry, conducts research, and collaborates with scientific and medical communities to advance understanding and treatment of CLCN4 conditions. The organization also engages in advocacy, education, and awareness campaigns to support affected families and promote scientific research.
Action Parkinson asbl
Action Parkinson asbl is a patient advocacy organization based in Brussels, Belgium, dedicated to supporting individuals with Parkinson's disease. The organization provides information, support services, and advocacy activities to improve the quality of life for patients. It offers patient education resources, support groups, and organizes activities and events to raise awareness and promote research. The organization collaborates with healthcare professionals, researchers, and other stakeholders to advance understanding and treatment of Parkinson's disease. It maintains a website with comprehensive information on symptoms, causes, diagnosis, and treatment options, and actively engages in policy advocacy and community outreach. Action Parkinson is a patient advocacy organization based in Brussels, Belgium, dedicated to supporting individuals with Parkinson's disease. The organization provides information, advocacy, and support services for patients and their families. It promotes awareness of Parkinson's disease, offers educational resources, and facilitates multidisciplinary care involving neurologists, physiotherapists, speech therapists, occupational therapists, psychologists, social workers, and pharmacists. The organization collaborates with various partners, including healthcare providers and community groups, to improve the quality of life for those affected. It engages in advocacy activities to influence health policies and supports research initiatives related to Parkinson's disease. The organization maintains a website, social media presence, and publishes reports and brochures to inform the public and patients. It was established in 2019 and operates primarily in Belgium, with a physical headquarters in Brussels and activities in Ixelles.
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.
Joining Jack
Joining Jack was officially launched with the Charity Commission by Alex and Andy Johnson, the proud parents of Jack, in July 2012 – less than nine months after their world fell apart when their son, three months short of his 4th birthday, was diagnosed with Duchenne Muscular Dystrophy, an incurable muscle-wasting condition for there is currently no cure. In 2022 Joining Jack celebrates 10 years of campaigning, fundraising, lobbying and investing in research to bring the best possible treatments with the best possible outcomes for ALL boys living with Duchenne.
Purple Our World
<p>The statistics around pancreatic cancer are heartbreaking, and quite frankly, frightening. At #PurpleOurWorld, our aim is to get the world talking about pancreatic cancer and ultimately change these horrible numbers. We want to turn our world purple!</p><p>The statistics around pancreatic cancer are heartbreaking. At #PurpleOurWorld, our aim is to get the world talking about pancreatic cancer and ultimately change these horrible numbers. We want to turn our world purple!</p> Purple Our World is a patient advocacy organization dedicated to raising awareness and funding for pancreatic cancer research. Founded in 2014, it aims to increase public understanding of pancreatic cancer symptoms, promote early detection, and support medical research initiatives. The organization collaborates with charities, government bodies, and corporate partners to amplify its impact. It organizes awareness campaigns, such as lighting landmarks purple, and engages with the community through social media, ambassador programs, and events. Purple Our World also advocates for policy change and increased research funding to improve survival rates and patient outcomes.
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.
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