CURRENT PROJECTS

The Tarlov Cyst Society is dedicated to developing resources, educational materials, and advocacy projects focused on advancing understanding, care, and treatment options for those affected by Tarlov Cyst Disease.

Join Us in Our Mission
Our progress relies on the support of volunteers and donors who share our vision. If you’re passionate about making a difference, we invite you to contribute your time, skills, or funds to help us develop essential projects like our Awareness Campaigns, Mailout Campaigns, and a Patient Registry—all aimed at improving lives and increasing understanding of Tarlov Cyst Disease.

PROJECT 01

Social Media Awareness Campaign

A social media awareness campaign is crucial to the Tarlov Cyst Society’s mission. By reaching a broad, engaged audience, we can educate the public, connect with healthcare providers, and ensure that Tarlov Cyst Disease is recognized, not overlooked. Increased awareness can lead to faster diagnoses, more funding for research, and greater support for patients. Social media allows us to share vital information, patient stories, and advocacy efforts in real time, amplifying our impact and helping create a world where Tarlov Cyst Disease receives the attention it deserves.

PROJECT 02

Medical Information Kits for Patients and Professionals

At the Tarlov Cyst Society, we understand how difficult it can be to navigate care for a complex and often misunderstood condition like Tarlov Cyst Disease. That’s why we’ve launched our fundraising campaign in an effort to cover the costs of our Medical Information Kits—a resource designed to help both patients and medical professionals better understand this condition and explore possible care options.

These kits include research-backed information about Tarlov Cyst Disease, an overview of current diagnostic protocols, and treatment options.

The kits are tailored to support productive communication between patients and their medical teams.

PROJECT 03

Patient Registry

A Patient Registry for Tarlov Cyst Disease is vital for advancing research, understanding patient experiences, and improving treatment options. By compiling detailed data on symptoms, treatments, and outcomes, we can identify patterns that guide future care and support medical research. This registry will provide insights into how Tarlov Cyst Disease progresses, track the effectiveness of treatments, and ultimately help healthcare providers make informed decisions. Building this resource is essential for shaping the future of Tarlov Cyst care and advocacy.

If you'd like to know more about how you can become involved, please email info@tarlovcystsociety.com with the words "Patient Registry" in the subject line.

MAKE A DONATION

“Fuel the Movement”
Awareness isn’t optional. It’s essential. Your donation powers our campaigns, connects isolated patients, and puts Tarlov Cyst Disease on the map. Help fuel a movement that’s long overdue.

Frequency

One time

Monthly

Amount

0/100

Comment (optional)