Our History

In 2018, families navigating this rare disease often did so without clear medical guidance. Dedicated education for healthcare providers was not readily available, and the burden of awareness fell heavily on patients and caregivers. From this, the National Initiative for Cockayne Syndrome was created, to fill that gap creating and releasing both a CS Caregiver Manual and a CS Healthcare Provider Manual as well as Continuing Medical Education.

By 2024, despite incremental progress, structured support systems remained sparse and to meet the growing needs of the community, The Cockayne Syndrome Foundation was established- built on the belief that no family should face a rare diagnosis alone. TCSF supported families by aiding in supplying items not covered by insurance to help ease the financial burden of caring for a child/children with Cockayne syndrome and Trichothiodystrophy.

Now, united in purpose, these two organizations have joined forces. Cockayne Syndrome Foundation (CSF) was established in 2025 as an arm of the 501(c)(3) public charity-National Initiative of Cockayne Syndrome (NICS). NICS partnering with The Cockayne Syndrome Foundation (TCSF) was a natural blend of two beautiful organizations with the outcome being Cockayne Syndrome Foundation. Together, they are expanding medical education, strengthening advocacy, and building a more connected and empowered rare disease community. CSF is committed to servicing the needs of both patients and the medical community that serves them.

FRENCHEEZ PRESENTS: Feel Good Food for Good

Come on down to Frencheez on Tuesday September 24, 2024 for a Spaghetti Dinner Benefit! ALL PROCEEDS from this event will go to The Cockayne Syndrome Foundation. Come one, come all! It's Feel Good Food for Good!!