Find Support & Feel Empowered
Access practical resources, connect with others, and find tools to help you better understand and navigate Tarlov Cyst Disease.
Resources to Support You
Living with Tarlov Cyst Disease can bring many questions. Our patient resources are designed to help you better understand your condition, prepare for conversations with healthcare providers, and connect with others.
Together we can turn knowledge into action!
Diagnostic Poster: Tools for Informed Care
Help prepare for healthcare conversations with a research-informed guide outlining key considerations in evaluating symptomatic Tarlov Cysts. This evidence-based guide is designed to:
- Educate medical professionals on how to recognize, evaluate, and confirm symptomatic Tarlov cysts.
- Provide patients with a credible, research-backed tool they can share during consultations to support their self-advocacy.
- Highlight key clinical indicators, diagnostic pathways, and testing protocols derived from leading research, including Dr. Kieran Murphy’s study on over 1,000 patient referrals.
Legal Education Letter Template
This template can help patients communicate important information about Tarlov Cyst Disease with healthcare providers, insurers, employers, and other decision-makers.
Use this resource as a starting point to explain the condition, share educational information, and support conversations about accommodations, coverage, and access to appropriate care.
Medical Education Kit: Resources for Patients & Providers
This comprehensive collection of research-informed resources helps patients and healthcare providers better understand Tarlov Cyst Disease.
Our kit includes information about symptoms, diagnosis, treatment options, common misconceptions, related conditions, and practical tools to support healthcare conversations, symptom tracking, and patient advocacy.
Your Guide to Living with Tarlov Cyst Disease
To help you begin your journey, we’ve created a free Tarlov Cyst Disease Patient Handbook (PDF)—a brief but essential introduction to understanding your diagnosis, common symptoms, diagnostic pathways, and available resources.
​This handbook is designed to:
- Give you a foundational understanding of TCD
- Prepare you for conversations with healthcare providers
Find a Specialist
Finding a healthcare provider familiar with Tarlov Cyst Disease can be challenging. This directory provides a starting point by sharing medical professionals identified by patients as having experience with or willingness to review Tarlov Cyst Disease cases. Patients are encouraged to research their options and choose a healthcare provider who best meets their individual needs.
Join Our Online Community
Living with Tarlov Cyst Disease can feel isolating, but you don’t have to navigate your journey alone. Connect with a welcoming community through our online support groups. Find encouragement, ask questions, share experiences, and build lasting connections.
Virtual Peer Support Meetings
Join our monthly virtual meetings to connect face-to-face with others living with Tarlov Cysts. Share experiences, ask questions and find support in a safe and welcoming space.
Watch Lectures & Case Studies on Tarlov Cyst Disease
Explore educational presentations featuring clinicians, researchers, and patient-focused discussions about Tarlov Cyst Disease.
These webinars cover topics such as diagnosis, symptoms, treatment approaches, and emerging knowledge about the condition, helping patients and supporters better understand current information and developments related to Tarlov Cyst Disease.
Resources for Medical Professionals
Discover evidence-informed resources, research, and clinical tools designed to support healthcare professionals in understanding and evaluating symptomatic Tarlov Cysts.