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.
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.
Jeans for Genes
Jeans for Genes is the annual fundraising event for the genetic condition community. It organizes activities such as promoting fundraising events, providing educational materials, and supporting families affected by genetic conditions. The organization encourages participation through workplace, school, and community events, and offers resources like fundraising packs, wristbands, and promotional materials. It also engages with media and local press to raise awareness and supports fundraising through online shops, bank transfers, cheques, and digital platforms. The organization is involved in advocacy, education, and community support activities, aiming to fund research and support services for families affected by genetic conditions.
Rett UK
Rett UK is the only UK charity that provides professional support to people living with Rett syndrome across the UK. Rett UK was founded in 1985 round a kitchen table by Yvonne Milne MBE. Since then we have grown to be the leading provider of information to not only families but also medical professionals new to the world of Rett syndrome.
Annabelle's Challenge
Annabelle's Challenge is a charity focused on supporting individuals affected by vascular Ehlers-Danlos syndrome (vEDS). The organization provides support programs, awareness campaigns, research funding, and professional guidance. It aims to improve quality of life for patients and families, promote research and medical understanding, and advocate for better healthcare and support services. The charity also hosts conferences, supports patient stories, and collaborates with NHS services and other professional organizations to advance knowledge and care for vEDS. Annabelle's Challenge is a patient advocacy organization dedicated to supporting individuals with vascular Ehlers-Danlos syndrome (vEDS). It provides resources, support groups, educational materials, and advocacy for patients and families affected by vEDS. The organization aims to improve awareness, facilitate research, and enhance patient care through collaboration with healthcare professionals and the community. It offers a helpline, educational resources, emergency preparedness tools, and opportunities for involvement in research and outreach activities. Annabelle's Challenge also promotes self-advocacy, mental health support, and access to medical information to empower patients in managing their condition.
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.
Action Kidney Cancer
<p>The United Kingdom’s only patient-led kidney cancer charity</p> Action Kidney Cancer is the UK’s largest and most active patient-led kidney cancer charity. It provides support, information, and a caring, knowledgeable community for patients, survivors, and those affected by kidney cancer. The organization offers a helpline, patient support forum, community map, patient groups, and patient information days; hosts educational resources such as essential guides to kidney cancer, information on treatments, help sheets, and materials to support shared decision-making; and facilitates campaigns, fundraising, and involvement in advocacy. It is a registered charity in England, Wales, and Scotland, with headquarters in Manchester, United Kingdom, and maintains partnerships and resources to assist kidney cancer patients and families, including online and in-person programs.
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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