Bridging the Knowledge Gap: The Launch of the Tarlov Cyst Disease Education Kit

2 days ago
2 min read

For far too long, people living with Tarlov Cyst Disease (TCD) have faced a wall of misunderstanding. Many have spent years searching for answers — only to be told their pain “shouldn’t exist” or that their cysts are “incidental findings.”

But research has proven that approximately 20% of identified Tarlov Cysts are symptomatic, capable of causing severe, life-altering pain and neurological symptoms. Despite this, awareness within the medical community remains limited.

That’s exactly why the Tarlov Cyst Society created the Tarlov Cyst Disease Education Kit — a tool designed to help both patients and healthcare professionals understand the true nature of this condition and begin bridging the gap between research and real-world care.

Picture of some of the materials that come with the Tarlov Cyst Disease Education Kit

Why the Tarlov Cyst Disease Education Kit Matters

The Education Kit was developed out of necessity — not theory. Every piece of material has been created and curated to help patients advocate for themselves and to help clinicians recognize the legitimacy and complexity of symptomatic Tarlov Cysts.

When doctors understand the data, when they see the symptoms documented clearly, and when they have access to published research, the conversation changes. Suddenly, patients are not dismissed — they’re seen, heard, and taken seriously.

What’s Included in the Tarlov Cyst Disease Education Kit?

Each Tarlov Cyst Disease Education Kit includes:

Educational materials for both patients and healthcare professionals
A Symptomatic Tarlov Cyst, Diagnostic Protocol Poster, a referral checklist and symptom log to help you make the most of each appointment
Research summaries, comorbidity information, and an overview of available treatment options

Every component was designed to empower you — whether you’re a patient sharing it with your care team, or a clinician seeking to understand this complex and underrecognized condition.

The mission behind this kit is simple but powerful: education leads to recognition, and recognition leads to better care.

By sharing the kit with your doctor, neurologist, or neurosurgeon, you’re helping spark a critical conversation that can lead to earlier diagnosis, better treatment outcomes, and greater awareness for every patient who comes after you.

No one should have to fight for proof that their pain is real — and with tools like this, fewer people will have to.

Get Your Kit

The Tarlov Cyst Disease Education Kit is now available for purchase through the Tarlov Cyst Society website: 👉 Order Your Kit Here

Your purchase not only provides you with vital advocacy tools — it helps fund continued education, awareness campaigns, and patient support initiatives through the Tarlov Cyst Society.

Together, we can change how Tarlov Cyst Disease is understood, diagnosed, and treated.