Tarlov Cyst Disease Education Kit
 
For many individuals living with Tarlov Cyst Disease (TCD), the path to diagnosis is marked by years of uncertainty, misunderstanding, and dismissal. Patients are often told their pain “shouldn’t exist” or that their cysts are “incidental findings.”
 
Yet medical research now shows that approximately 20% of identified Tarlov cysts are symptomatic, capable of causing significant pain and neurological impairment. Unfortunately, this evidence is not known by frontline care providers and even specialists, leaving patients without informed care or validation.
 
The Tarlov Cyst Disease Education Kit was created to help bridge this gap—equipping both patients and healthcare professionals with clear, research-based information about the condition and how it can be properly assessed and managed.
 
What’s Inside
Educational materials for patients and healthcare providers
A referral checklist and symptom log to help guide medical appointments
Research summaries highlighting key studies and comorbidities
Information about treatment options and current evidence-based best practices
 
Subscription for Updates
Your purchase includes a free subscription for updated materials and new research additions to the Education Kit as they become available — ensuring you always have access to the most current information.
 
Why There’s a Cost
Each kit costs approximately $35 to make, covering the costs of the tools needed, printing, and shipping for this oversized, heavy envelope filled with knowledge, hope, and compassion.
On average:
Printing, tools and materials: ~$15
Packaging and postage: ~$15
Any difference goes toward the costs of website upkeep and outreach to physicians
 
No one at the Tarlov Cyst Society is paid for their work. Everyone who works with the Tarlov Cyst Society is a volunteer, and every dollar raised goes back into our ongoing efforts to change the world for persons affected by Tarlov Cyst Disease.
 
Every kit was created and assembled by volunteers who donate their time because they believe "knowledge changes outcomes".
 
If we could offer these kits for free, we would. But the reality is that every element—from printing to mailing—is a real cost that must be covered so this vital information can continue to reach patients and doctors worldwide.
 
Purpose
Every patient deserves to be heard, believed, and evaluated through an informed, research-based lens.

By sharing this kit with your healthcare team, you help:
Increase clinical awareness of Tarlov Cyst Disease
Encourage evidence-based diagnosis and care
Support the ongoing mission to improve recognition and treatment globally
 
Together, We’re Building Change
Each kit mailed, each patient and doctor educated, and each conversation started brings us one step closer to a future where no patient has to fight to prove that their pain is real.