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.
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.
Barth Syndrome Foundation
The Barth Syndrome Foundation (BSF) is the only organization dedicated to saving lives around the world through education, advances in treatments, and finding a cure for Barth syndrome, a life-threatening genetic, multi-system disorder mostly affecting males. BSF provides vital information, credible resources, and supports research efforts to improve diagnosis, treatment, and quality of life for individuals with Barth syndrome. The foundation also advocates for regulatory approval of therapies, collaborates with healthcare providers and researchers, and offers community support and educational programs. The Barth Syndrome Foundation (BSF) is dedicated to saving lives around the world through education, advances in treatments, and finding a cure for Barth syndrome, a life-threatening genetic, multi-system disorder mostly affecting males. The foundation provides vital information, credible resources, and supports research initiatives. It engages in advocacy activities, offers patient and clinician resources, and fosters community support. The organization is involved in clinical trials, research funding, and policy advocacy. It maintains a comprehensive website with sections on research, family resources, diagnosis, and community engagement. The foundation also collaborates with international affiliates, partners, and medical advisory boards. It is committed to improving diagnosis, treatment, and quality of life for individuals with Barth syndrome and their families.
OnkoMajak
Our mission is to raise the awareness of the general and specialist public about oncological diseases, their prevention, early diagnosis and treatment options. The goal is an informed and proactive public. We strive to reduce the incidence and mortality of oncological diseases not only through interactive educational experiences within the Gut Tour and Healthy Lungs roadshows. The domain of the roadshow is an inflatable model of the colon and lungs, which helps to understand the risks and causes of various diseases.
Leukaemia Care
Leukaemia Care is the UK’s leading leukaemia charity. For over 50 years, we have been dedicated to ensuring that everyone affected receives the best possible diagnosis, information, advice, treatment and support.
Unique
The Rare Chromosome Disorder Support Group (Rare Chromo) is a UK-based charity dedicated to supporting individuals and families affected by rare chromosome and gene disorders. They provide information, support, and advocacy for affected individuals, their families, and professionals. The organization aims to raise awareness, promote research, and improve services related to rare genetic conditions. They organize events, webinars, and produce educational resources to enhance understanding and support for the community. Their activities include facilitating research collaborations, providing a helpline, and developing informational materials to empower affected families and raise public awareness. Unique is a small charity dedicated to supporting individuals and families affected by rare chromosome and gene disorders. It provides information guides, family resources, and promotes awareness through events and research collaborations. The organization offers free membership to families, professional membership for clinicians and researchers, and maintains a confidential offline database of affected members. Unique advocates for affected individuals, supports research, and works to improve understanding and management of rare genetic conditions. It also provides educational materials, support groups, and participates in policy and research initiatives. The organization is based in Surrey, UK, with a physical address at The Stables, Station Road West, Oxted, Surrey, RH8 9EE, and has a global membership.
Jo’s Cervical Cancer Trust
Jo’s Cervical Cancer Trust went into liquidation in Spring 2024 and has closed. The charity no longer exists and content has been gifted to The Eve Appeal, which now provides current information on cervical cancer, screening and HPV on eveappeal.org.uk. Jo’s Cervical Cancer Trust went into liquidation in Spring 2024 and has closed. The charity no longer exists and all its content, social media and online channels are not in operation. All content from Jo’s original website was gifted to The Eve Appeal and they have incorporated that information which is now available on: https://eveappeal.org.uk/, this is where you will find all current information on cervical cancer, screening and HPV. If you have any questions about screening, test results or HPV and would like to speak to a nurse, please contact The Eve Appeal’s nurse led information service, Ask Eve, on 0808 802 0019 – free to call from landlines and mobile phones – or email nurse@eveappeal.org.uk. You can find The Eve Appeal on: Website: https://eveappeal.org.uk, Instagram: www.instagram.com/eveappeal/, Facebook: www.facebook.com/eveappeal, LinkedIn: www.linkedin.com/company/the-eve-appeal
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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