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.
Team Lopez Foundation
The Team Lopez Foundation was incorporated in memory of Alex Lopez who was tragically lost to pancreatic Cancer. Our mission to honour Alex’s legacy is to raise funds for Pancreatic Cancer Research. We have established with Sydney University the Alex Lopez PhD Scholarship in Pancreatic Cancer. The scholarship named in loving memory of Alex, plays a pivotal role in attracting talented PhD students from around the world to improve the survival rates of pancreatic cancer patients. Over the last 15 years, University of Sydney clinicians based in their teaching hospital on the Royal North Shore campus, have become leaders in treating pancreatic cancer. Patients treated by their team survive almost twice as long after diagnosis compared to the average Australian pancreatic cancer patient treated elsewhere. At the University of Sydney, as part of the Kolling Institute at the Royal North Shore Hospital, provides the research foundations that the team refine into best practice.
Schinzel-Giedion Syndrome Foundation
The Schinzel-Giedion Syndrome Foundation is a registered UK charity (Registered Charity Number 1186327) established in 2019 by an international group of parents of children with Schinzel-Giedion Syndrome (SGS). Our foundation has been created to represent children with SGS and their families living all around the world. The Schinzel-Giedion Syndrome Foundation is a UK registered charity established in 2019 by an international group of parents of children with Schinzel-Giedion Syndrome (SGS). It aims to represent children with SGS and their families worldwide. The foundation is involved in research, advocacy, and support activities related to SGS. It collaborates with medical and scientific advisory boards, and maintains a registry and resources for families and professionals. The foundation also engages in public education, policy advocacy, and fundraising efforts. It provides educational materials, supports families, and promotes research into SGS, including genetic, clinical, and therapeutic studies. The foundation's activities include organizing conferences, publishing research, and fostering collaborations among researchers, clinicians, and families.
Dravet Syndrome UK
Dravet Syndrome UK is a patient support organization dedicated to providing information, emotional support, and resources for families affected by Dravet Syndrome. They offer practical and emotional support, mental health support, resources and advice, financial grants, and support for families overseas. The organization also engages in research, advocacy, and professional collaboration to improve care and awareness of Dravet Syndrome. They maintain a website with extensive resources, including guides, leaflets, and information for healthcare professionals and families. The charity is based in Chesterfield, UK, with a charity number 1128289, and has a presence on social media platforms such as Twitter, Facebook, Instagram, LinkedIn, and YouTube.
Wolfram Syndrome UK
Wolfram Syndrome UK is a charity dedicated to supporting individuals affected by Wolfram Syndrome, raising awareness, funding research, and providing support and resources for patients and families. The organization works closely with hospitals, clinicians, and researchers to advance understanding and treatment of Wolfram Syndrome. It offers patient support programs, educational resources, and hosts conferences and clinical trials updates. The charity also advocates for policy change and collaborates with international organizations to improve care and research efforts.
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.
MPN Voice
MPN Voice is a registered charity focused on supporting individuals with myeloproliferative neoplasms (MPNs). Their activities include providing information, raising awareness, supporting patients through various programs, conducting research, and advocating for the MPN community. They offer educational resources, patient support services, and organize events and forums. They also engage in clinical research and trials, provide patient stories and testimonials, and maintain a strong online presence through their website and social media channels. As a charity, they are under the auspices of Guy's and St Thomas' Foundation, with registered charity number 1160316. MPN Voice is a registered charity under the auspices of Guy's and St Thomas' Foundation. It supports patients with myeloproliferative neoplasms (MPNs) through advocacy, education, support groups, research, and awareness campaigns. The organization provides patient education resources, hosts forums and events, and collaborates with healthcare professionals and research institutions. MPN Voice also engages in policy advocacy, clinical trial support, and fundraising activities to improve patient outcomes and quality of life. It maintains a website with extensive information on MPNs, treatments, and living with the condition, and actively promotes community engagement and patient empowerment.
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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