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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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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Finding the right support group is simple. We've made it easy for you.
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Review detailed profiles of advocacy groups, including their mission, resources, and contact info.
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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.
The Lymphoedema Support Network
The Lymphoedema Support Network (LSN) is a registered charity and the UK’s national patient support charity for those living with or affected by lymphoedema.’ The Lymphoedema Support Network takes the lead role in supporting and empowering people with lymphoedema by providing a high standard of information and promoting self-help. Since its inception in 1991, when there was very little information or help available for patients, the LSN has evolved into an independent and influential charity. As a charity run by people with lymphoedema, the LSN has a real understanding of the lived experience of the condition which it uses to inform its work.
Pancreatic Cancer Europe
Pancreatic Cancer Europe (PCE) is a European multi-stakeholder platform that aims to bring together experts from across Europe, including academics, physicians, policymakers, patient groups, and journalists, with the shared goal of improving care for pancreatic cancer patients. The organization engages in advocacy, research, awareness campaigns, and policy work to address gaps in treatment, promote innovative therapies, and ensure equitable access to care. PCE collaborates with industry partners, healthcare professionals, and patient organizations to advance research, support patient needs, and influence healthcare policies at the European level. The organization also maintains a network of members, including patient advocates, medical professionals, and research institutions, and participates in European and international cancer and gastroenterology organizations.
EGFR Positive UK
EGFR Positive UK is a charity dedicated to empowering patients diagnosed with EGFR mutation positive Non-Small Cell Lung Cancer (NSCLC), primarily at Stage 4. The organization aims to inform and involve patients in their treatment decisions, drawing on the European Cancer Organisation’s Code of Cancer Practice. It provides resources, support, and advocacy for individuals affected by EGFR+ lung cancer, including educational materials, patient support services, and information about treatment options. EGFR Positive UK also engages in research dissemination, policy advocacy, and community support activities. The organization is a member of Lung Cancer Europe and collaborates with various UK and international lung cancer organizations. It offers conferences, campaigns, and a good practice guide to improve patient care and outcomes.
Aclt
The African Caribbean Leukaemia Trust (ACLT) is dedicated to registering stem cell, blood, and organ donors, especially focusing on diversifying donor registers to include more Black heritage donors. They work in partnership with organizations like NHS Blood & Transplant, Anthony Nolan, and DKMS to encourage registration and donation. ACLT does not directly take donations but promotes registration drives, volunteer programs, fundraising, and sponsorship to support their mission of saving lives through donor registration. They also highlight the importance of blood and stem cell donations for patients of all ethnicities, with a particular emphasis on supporting patients of Black heritage who require closely matched donors. The organization is involved in advocacy, awareness campaigns, and community engagement to increase donor diversity and support patients with blood cancers and disorders.
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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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