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The Tethered Cord Syndrome Research Initiative for Rare Diseases was developed to enhance the understanding and prevalence of Tethered Cord syndrome within the spectrum of rare diseases. 

What is tethered cord syndrome?

Tethered Cord Syndrome is a condition where the spinal cord becomes abnormally stretched or "tethered," which can lead over time to pain, muscle weakness, and neurological problems.

Dedicated to uncovering  Tethered Cord Syndrome in rare diseases

Our initiative is advancing knowledge of Tethered Cord Syndrome (TCS) through collaborative research and patient-centered inquiry, with the goal of improving diagnosis, treatment, and quality of life for those affected.

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TCS is an under-recognized condition within the rare disease spectrum. By combining clinical research, patient experiences, and medical education, we aim to increase awareness, drive innovation in care, and support families navigating this complex disorder.

Our Team

The TCSRI brings together researchers, clinicians, and advocates committed to advancing understanding and care for Tethered Cord Syndrome. Each member brings a unique perspective to this work—learn more about the people behind the initiative.

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©2025 by TCS Research Initiative. 

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