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young woman with long brown hair and tan t-shirt feeding a horse

Never Alone -

we exist to support every child and the families who love them.

Young boy with plaid shirt, blue jeans and a large smile walking on a boardwalk near a lake

Rare Diagnosis,

extraordinary children.

young girl sitting in a fuzzy chair with pink shirt and green pants with a parent tickling her head with a large sunflower

One in 1,000,000

children are diagnosed with Trichothiodystrophy.

Young woman leaning against door wearing a floral and leopard print dress and pink glasses smiling at the camera

Two in 1,000,000

children are diagnosed with Cockayne syndrome.

We stand beside families providing support, education, and research driven hope.

Meet Our Kids

What's New

News, Updates, & Stories

Stay connected with the latest Cockayne syndrome and Trichothiodystrophy research updates, foundation news, and inspiring stories from families and advocates in our community.

Upcoming Events

Join upcoming Cockayne Syndrome Foundation awareness events, educational programs, and community gatherings that bring together families, researchers, and supporters.

Empowering Families and Providers

Care
Manuals

Practical guidance for families and healthcare providers

Family
Resources

Support, information, and community for families affected by CS and TTD

Physician
Resources

Research and insights to improve care and patient outcomes

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