Building Awareness Together

Welcome to our community. Here, people living with Spinal Meningeal cysts, their families, and advocates come together to share experiences, find support, and raise awareness, so no one has to face this journey alone.

Join Our Facebook Group

Join the Tarlov Cyst Awareness and Education Initiative Facebook group, hosted by The Tarlov Initiative. We are an advocacy-focused community where members connect, share strategies for navigating medical dismissal, and get updates on our campaign progress.

Come share your experience, learn how to get your symptoms recognized, and help us drive real change together. We would love to have you in our community!

(For in-depth discussions or questions about treatments you may find one of the below support groups helpful.)

Join the community

Get Involved

There are many ways to help build awareness and support the Spinal Meningeal cyst community. Choose the path that fits you.

Volunteer

Share Your Story

Support Resources

Find connection, guidance, and tools to help you advocate for your care.

Click Here

Support Groups

Connect with others who understand life with Tarlov Cysts through peer-led online groups and information pages.

Advocacy Toolkit and Caregiver Resources Coming Soon.....