Understanding Tarlov Cyst Disease Starts Here
Explore evidence-based information, practical resources, and a supportive community that will help you navigate your health journey.
Too many people living with Tarlov Cyst Disease face uncertainty after diagnosis. The Tarlov Cyst Society provides trusted information, patient support, and connections to research and clinical communities to help people better understand their condition and advocate for informed care.
How We Help
Patient Support
Find reliable information, practical resources, and guidance to help you understand Tarlov Cyst Disease and advocate for your health.
Clinician Resources
Access current research and clinical studies designed to support healthcare professionals evaluating and caring for people with Tarlov Cyst Disease.
Research & Awareness
Explore first-hand patient stories, educational content, and current research to better understand Tarlov Cyst Disease and stay informed.
Part of the Rare Disease Community
The Tarlov Cyst Society is listed in the National Organization for Rare Disorders (NORD) Patient Organization Directory.
Latest Stories & News Updates
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Sixteen Years of Searching for Help
In 2010, I reached out to the orthopedic oncologist who had removed a nerve sheath tumour from my right thigh two years earlier. Whenever I stood up, I experienced a sensation I can only describe as an electric shock travelling from my head to my right foot. It was painful and threw me off balance….
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The Grief We Don’t Talk About: Living With Chronic Illness
When we hear the word grief, most of us think about losing someone we love, but grief can also happen when chronic illness changes the life we expected to live. People living with chronic illness may grieve their health, independence, career, relationships, physical abilities, financial security, identity and plans for the future. These losses can…
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Becky Chandler-Berry’s Story
Becky Chandler-Berry, MD
My tailbone pain began in 2019 and left me barely able to sit on the medical stool in my office while I saw patients.
