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.
Metabolic Support UK
Metabolic Support UK are the leading organisation for Inherited Metabolic Disorders (IMDs), supporting thousands of people worldwide through providing individual support, building communities, and continually advocating for and empowering those living with IMDs. Since its inception in 1981, our organisation has strived to support those in the rare community, expanding new-born screening, accelerating the development of orphan drugs, and acting instrumentally in establishing EURORDIS, ensuring people living with IMDs have the best quality of life possible. Moving forward, utilising our 10 year strategy we will continue to improve the lives of people living with Inherited Metabolic Disorders, and to work collaboratively with our key partners and supporters to ensure that we achieve this. Our strategy focuses on four main pillars: Indvidual Support Building Communities Empowerment Advocacy
The Aarskog Foundation
The Aarskog Foundation is a global alliance of people living with Aarskog Syndrome (AS) X-Linked inherited. The Aarskog Foundation brings together National and International Aarskog Syndrome patients from around the world to create a global alliance of patients and families faced with common challenges derived from the uniqueness of this RARE Genetic condition. Addressing Aarskog Syndrome is vital in order for it to be recognised as a disability across all governing bodies to ensure all Aarskog patients have access to the same resources as any other person. Patients living with Aarskog Syndrome come together through The Aarskog Foundation in a structured environment to create an Aarskog community and a voice through advocacy and exchange experiences. To this end we aim to unite, expand and put Aarskog Syndrome on the agenda of organisations and institutions both in the UK and across the world.
European Cancer Patient Coalition
The European Cancer Patient Coalition (ECPC) is a patient-led organization dedicated to representing and advocating for cancer patients across Europe. Its core activities include policy advocacy, research support, patient education, and promoting access to quality cancer care. ECPC engages in policy development, collaborates with European institutions, and runs various campaigns to improve cancer outcomes. The organization also provides resources and support to patients and caregivers, and actively participates in European health initiatives and research projects. ECPC aims to empower patients, influence health policy, and ensure that patient perspectives are integrated into cancer care and research.
Childhood Interstitial Lung Disease Foundation
The Child Lung Foundation is a charity supporting children affected by childhood Interstitial Lung Disease (chILD). Established in 2010, it provides resources, support groups, and promotes research development. The organization aims to improve diagnosis, treatment, and quality of life for children with chILD, and offers educational resources, patient support services, and advocacy activities. It collaborates with medical professionals, researchers, and patient families to advance understanding and care of rare pediatric lung diseases.
Cancer Research UK
Patient advocacy organization at Cancer Research UK
Australian Pancreatic Cancer Genome
The Australian Pancreatic Cancer Genome Initiative (APGI) is a global research enterprise of over 100 scientists, clinicians and allied health professionals involved in pancreatic cancer research and care. The APGI has mapped the genome of pancreatic cancer in a landmark effort as part of Australia’s contribution to the International Cancer Genome Consortium (ICGC). This fundamental understanding of the genetic underpinnings of Pancreatic Cancer will accelerate the evolution of pancreatic cancer care into the molecular age of oncology. The APGI’s world-class BioResource – biological samples coupled with comprehensive clinical and genomic data – is aiding research worldwide in ongoing discovery and development through quality research and strategic collaborations.
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.
Start Your Journey
Take the first step toward connection and support. Search for patient groups that match your needs today.
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