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welcome to the
TARLOV CYST SOCIETY
Empowering Patients, Raising Awareness, and Advocating for Change
Welcome to the Tarlov Cyst Society, a place where patients, families, healthcare providers, and advocates come together with one shared purpose: to raise awareness, advance understanding, and improve the lives of those affected by Tarlov Cysts.
Tarlov Cysts—fluid-filled sacs that form along the spinal nerve roots—have too often been misunderstood and dismissed as "incidental findings" with no clinical significance. Yet, for those living with symptomatic Tarlov Cysts, the reality is far different, as research has shown that these cysts can cause debilitating symptoms that affect every aspect of life.
Patient Handbook: Your Guide to Living with Tarlov Cyst Disease
Whether you’re newly diagnosed or have been living with Tarlov Cyst Disease for years, this comprehensive handbook offers practical information, insights, and support to help you better understand your condition, advocate for yourself, and connect with others on a similar journey.
Inside, you’ll find details on diagnosis, treatment options, symptom management, mental health, and how to build a strong care team and support network.
Join In The Conversation
Cultivating Caring Communities
The Tarlov Cyst Society offers multiple ways for visitors and members to connect, share, and support one another.
💬 Peer Support Groups
Join ongoing discussions through our private support groups and blog comment sections—spaces created to amplify patient voices, validate lived experiences, and foster shared learning.
📢 Monthly Peer Support Meetings – You’re Invited
We host a virtual peer support meeting on the first Saturday of every month at 1:00 PM (Mountain Time). Whether you're newly diagnosed, seeking community, or want to ask questions in a safe space—you're welcome here.
📩 Want to share your story or contribute to our blog?
Reach out to us at info@tarlovcystsociety.com—we’d love to hear from you.
Your voice matters. Let it be heard.
Together, we’re building strength through connection, one conversation at a time.
Help Shape the Future of Tarlov Cyst Disease Care
We’re excited to share an important next step in our mission to better understand and represent the needs of those living with Tarlov Cyst Disease. The Tarlov Cyst Society has launched a short Patient Experience Survey to begin collecting general information directly from our community.
By taking a few minutes to complete this survey, you’ll be helping us:
✅Gain insight into what patients are experiencing in their day-to-day lives
✅Identify patterns and shared challenges across the community
✅Build a secure contact list so we can keep you updated on:
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Current research
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Systemic developments in care
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The launch of our future Tarlov Cyst Disease Patient Registry
Your information will remain confidential, and you can opt out at any time.
Thank you for being part of this growing, global movement.
Together, we are bringing Tarlov Cyst Disease out of the shadows—one voice at a time.
Get Engaged
You Can Help Us Succeed In Achieving Our Mission
Disclaimer
The Tarlov Cyst Society website is created and maintained by members of the Tarlov Cyst Society. The information provided on this website is for informational and educational purposes only and should not be interpreted as medical advice, diagnosis, or treatment.
This website shares information based on peer-reviewed medical research, expert publications, and the collective experiences of patients. While we strive to ensure the accuracy and relevance of the information provided, medical knowledge is constantly evolving, and individual healthcare decisions should always be made in consultation with a qualified medical professional.
The inclusion of medical studies, research articles, or treatment discussions does not constitute an endorsement or recommendation of any specific medical approach. Patients should consult their healthcare providers before making any decisions regarding their medical care.