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.
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.
Children & Young People's Cancer Association (CCLG)
CCLG - The Children & Young People's Cancer Association is a charity dedicated to supporting children, young people, and their families affected by cancer. They focus on research, early diagnosis, advocacy, education, and support services. They operate a wide range of programs including public awareness campaigns like Child Cancer Smart, fundraising initiatives, and professional guidance to improve cancer diagnosis and treatment in children and young people. They also lead research projects, collaborate with healthcare professionals, and influence policy to improve outcomes for young cancer patients. CCLG - The Children & Young People's Cancer Association is a registered charity in England, Wales, and Scotland dedicated to supporting children, young people, and their families affected by cancer. The organization provides information resources, advocacy, research, and support services. It operates from Leicester, UK, and has a focus on childhood and young people's cancers, including types such as leukemia, brain tumors, and other pediatric cancers. CCLG collaborates with medical research charities, offers educational materials, and engages in policy and advocacy activities to improve cancer care and outcomes for young patients.
DKMS
DKMS is dedicated to the fight against blood cancer and blood disorders. Be part of our team saving patients' lives around the world.
Rarebeacon
Beacon for rare diseases is a UK-based charity that hosts events and community activities for the rare disease community. The organization offers events such as patient group trainings, masterclasses, and conferences, and maintains an events calendar featuring both online and in-person formats. They emphasize accessibility of events and state that events are designed for all stakeholders in the rare disease community, with at least one target audience being rare disease patient groups. The site footer provides the organization’s address in Cambridge, charity and company registration details, and a contact email for the projects team (projects@rarebeacon.org). Rarebeacon, now known as Beacon for Rare Diseases, is a UK-based organization dedicated to supporting and advocating for individuals with rare diseases. Founded in 2012, it provides resources, research, and community support to improve the lives of patients and their families. The organization engages in public education, policy advocacy, and collaborates with research institutions. It offers patient support programs, educational resources, and hosts events and campaigns to raise awareness about rare diseases. Its activities include publishing impact reports, facilitating patient and caregiver networks, and promoting research and drug development in the rare disease field. The organization operates primarily in the UK but has a global outreach through its online platforms and partnerships.
Fundación Colombiana de Leucemia y Linfoma
Fundación Colombiana de Leucemia y Linfoma - Funcolombiana De Leucemia Linfoma en Bogotá. Centro de referencia en Colombia sobre leucemia y linfoma. La mejor opción en orientación y soporte para...
The Glaucoma Foundation
The Glaucoma Foundation is dedicated to developing a cure for glaucoma through innovative research, collaboration and education. Our goal is to eradicate blindness caused by glaucoma.
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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