Welcome to the Share and Care Cockayne Syndrome Network. Our mission is to help children with Cockayne syndrome and their families improve quality of life through support, education, and research. Share and Care Cockayne Syndrome Network focuses on their goal to help families obtain an earlier diagnosis and share information on drugs and procedures that prove to be beneficial to children with Cockayne syndrome.




Share & Care is an ALL VOLUNTEER organization there are no paid salaries, donations go directly to helping families with kids with CS and to research for CS. We are a 501(c)3 Not-for-Profit Organization. Your donations are fully tax deductible and greatly appreciated! 🙂

We do need more volunteers to help us with our organization. If you have professional skills you could offer to do some consulting for us. If you would like to have a fundraiser we can help you organize one. We are currently in the process of building a new website but we need help creating new content and organizing it, please let us know if you can help. We are also having our next Scientific Meeting for translational research, as well as our Family Conference which will be held together next July in Salt Lake City Utah. If you have connections in any way there, we’d love to hear from you.


A Normal Life


How do you live a normal life raising a child with a genetic disorder? Learn more in this video about living with Cockayne Syndrome.