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.
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Access support groups from around the world, or find local communities near you that speak your language.
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How It Works
Finding the right support group is simple. We've made it easy for you.
Search Your Condition
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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.
Fabry International Network
Since Fabry disease is a rare genetic disorder, and since there are thousands of rare diseases, it’s hard for individual patients and caregivers to be heard. Therefore, when striving for better care and cure for Fabry patients, we need them to join forces and speak out. That’s where FIN comes in: an independent and vibrant network of Fabry patient associations whose purpose is to collaborate, communicate and promote best practice to support those affected by Fabry disease. We back 60 patient organizations in 57 countries. We connect health professionals and we ally with industry partners. We envision a world where every single person affected by Fabry disease has the best quality of life possible through early diagnosis, treatment and cure. Our mission, therefore, is to empower Fabry patients all over the world. FIN is a non-profit organisation registered in The Netherlands. The administrative support is based in Belgium. The Board of Directors meet regularly either online or face-to-face. In addition, they hold regular meetings with the industry partners and medical advisors.
TAPS Support Foundation
The TAPS Support Foundation is a registered charity dedicated to changing the way monochorionic twin pregnancies are diagnosed, handled, and treated, as well as raising the profile of Twin Anemia Polycythemia Sequence (TAPS).
Fight Bladder Cancer
Fight Bladder Cancer is a UK-based charity founded and run by bladder cancer survivors and their families. It supports anyone affected by bladder cancer, raises awareness, supports medical research, and campaigns for policy change to improve bladder cancer treatments. Fight Bladder Cancer is a charitable organization dedicated to supporting individuals affected by bladder cancer through education, advocacy, research, and patient support services. They provide resources for patients, carers, and healthcare professionals, including informational materials, support groups, and campaigns to raise awareness about bladder cancer. The organization also engages in policy advocacy, collaborates with medical and research institutions, and promotes early detection and treatment options. Their activities include publishing reports, conducting research, and organizing community events to improve patient outcomes and increase public understanding of bladder cancer.
Lung Cancer Research Foundation
The mission of the Lung Cancer Research Foundation (LCRF) is to improve lung cancer outcomes by funding research for the prevention, diagnosis, treatment and cure of lung cancer.
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.
Tuberous Sclerosis Association
The Tuberous Sclerosis Association (TSA) was launched in 1977 with a membership of 50 families and funds of just £25. We have grown from a round robin support letter to a professional organisation providing support to families affected by Tuberous Sclerosis Complex (TSC) across the UK. For our five year strategy of 2019-2023, our aim is to ‘REACH more people and drive more REseArCH.’ The TSA is a registered charity with three charitable objectives: To support individuals affected by TSC, together with their families or carers To encourage and support research into the causes and management of TSC To provide education and information We look to our past to retain our community spirit, but drive forward by pushing the boundaries of what a small and dedicated team is capable of achieving.
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.
Start Your Journey
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