The Tarlov Cyst Society was founded because people living with Tarlov Cyst Disease deserve access to reliable information, supportive community, and informed care.

After receiving her own diagnosis in 2010 following years of unexplained symptoms, founder and journalist Sherri L. Jones began searching for answers. As she explored medical research and connected with specialists and patients around the world, she discovered that many others were facing the same challenges: long diagnostic journeys, limited information, and uncertainty about where to turn for support.

What began as a personal search for understanding quickly grew into a broader effort to connect patients, share knowledge, and reduce the isolation so many people living with rare diseases experience.

As the community expanded, so did its vision. Patients needed more than peer support — they also needed access to trusted information and educational resources, opportunities to participate in research, and stronger connections between patients, researchers and healthcare professionals to improve care.

With the support of advocates, volunteers, and medical professionals, that grassroots network evolved into the Tarlov Cyst Society, a registered Canadian charity serving patients in Canada and around the world.

Today, the Tarlov Cyst Society provides educational resources, patient support programs, peer connection opportunities, clinician resources, and advocacy initiatives aimed at improving recognition and understanding of Tarlov Cyst Disease. The organization also supports research initiatives, developing the world’s first Global Tarlov Cyst Patient Registry to ensure that patient experiences help inform future advances in care.

What began as one patient’s search for answers has grown into an international community united by a shared belief — that no one should have to navigate Tarlov Cyst Disease alone.