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.
Bowel Research UK
Bowel Research UK is funding life-changing research into bowel cancer and other bowel diseases. Every year over 16,000 people die from bowel cancer in the UK and over a million suffer from bowel disease. By researching cutting edge treatments and investing in the best science, we’re saving and improving people’s lives Bowel Research UK was founded in 2020 following a merger between two well-respected charities: Bowel & Cancer Research and Bowel Disease Research Foundation (BDRF). We’re the UK’s leading specialist bowel cancer and bowel disease research charity and our research is saving and improving lives.
Angelman UK
AngelmanUK is a United Kingdom-based support group. The trustees are all volunteers with direct experience of Angelman Syndrome either as parents or relatives of children or adults with AS. We also have a panel of experts who are able to answer and advise on more complex questions. Many of these experts are recognised worldwide in their fields of expertise relating to Angelman Syndrome.
Gene People
Gene People, previously known as Genetic Disorders UK, is a registered charity with a vision to improve the lives of individuals and families affected by genetic conditions. While individual genetic conditions are rare, it is thought that there are currently more than 6,000 diagnosed conditions and new conditions are being identified every day. It is estimated that 1 in 25 children is affected by a genetic condition. This means that in the UK, 30,000 babies and children are newly diagnosed each year and more than 2.4 million children and adults are living with a genetic condition. Our mission is to be the leading source of information and support for both those affected by a genetic condition, and the charities and patient groups that support them, by bringing together everyone’s combined experience in a place it can be shared.
KBG Syndrome Foundation
HOME KBG SYNDROME RESOURCES ABOUT THE FOUNDATION CONTACT US PARTNERS VOLUNTEERING Our all-volunteer board has a deep respect and gratitude for the community volunteers working to build awareness for KBG syndrome. Learn about how you can help. The KBG Syndrome Foundation was founded in June 2015 as a affiliate of The Epilepsy Association of Utah after CEO and President, Annette Maughan's son was diagnosed with the condition. While speaking with the geneticist, she and her husband, Glenn, were told to use social media and online searches to learn more and find support for his newly found diagnosis. They thought, why USE social media when someone needs to BE the social media outlet for families and researchers alike.
Annabelle's Challenge
Annabelle's Challenge is a charity focused on supporting individuals affected by vascular Ehlers-Danlos syndrome (vEDS). The organization provides support programs, awareness campaigns, research funding, and professional guidance. It aims to improve quality of life for patients and families, promote research and medical understanding, and advocate for better healthcare and support services. The charity also hosts conferences, supports patient stories, and collaborates with NHS services and other professional organizations to advance knowledge and care for vEDS. Annabelle's Challenge is a patient advocacy organization dedicated to supporting individuals with vascular Ehlers-Danlos syndrome (vEDS). It provides resources, support groups, educational materials, and advocacy for patients and families affected by vEDS. The organization aims to improve awareness, facilitate research, and enhance patient care through collaboration with healthcare professionals and the community. It offers a helpline, educational resources, emergency preparedness tools, and opportunities for involvement in research and outreach activities. Annabelle's Challenge also promotes self-advocacy, mental health support, and access to medical information to empower patients in managing their condition.
Hope for Hypothalamic Hamartomas
Hope for Hypothalamic Hamartomas is dedicated to supporting research into hypothalamic hamartomas (HH), a rare brain disorder characterized by lesions in the ventral hypothalamic region. The organization funds and awards research grants, facilitates international symposia, and collaborates with leading medical and research institutions worldwide. Their research initiatives include genomic profiling, functional MRI studies, animal model development, and genetic research to better understand HH etiology, diagnosis, and treatment options. They actively support scientific exchange through conferences and publish research articles. The organization also engages in advocacy, provides educational resources, and partners with medical professionals and institutions to advance HH research and treatment.
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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