National Initiative for Cockayne Syndrome (NICS)

We are friends, family and educators who have seen first hand the affects CS has on both the children and their families. The National Initiative for Cockayne Syndrome (NICS) is dedicated to the improvement of quality of life for children and families affected by Cockayne Syndrome through medical education, early diagnosis, treatment, advocacy and the promotion of available resources. To provide accessible, evidence-based, online education for pediatricians to support recognition, diagnosis and treatment of the syndrome; particularly to develop on line protocols for emergency and hospital visits. To establish an online resource center for CS parents and caretakers to include therapeutic options, medications, latest research, quality of life issues, and healthcare providers. To establish an online virtual CS community, through which families and caretakers can seek out advice, ask questions and share their stories. To create an “Ask the Expert” portal through which families and caretakers can ask questions and have “mini consults” with an CS expert.

The National Initiative for Cockayne Syndrome (NICS) is dedicated to the improvement of quality of life for children and families affected by Cockayne Syndrome through medical education, early diagnosis, treatment, advocacy and the promotion of available resources. To provide accessible, evidence-based, online education for pediatricians to support recognition, diagnosis and treatment of the syndrome; particularly to develop on line protocols for emergency and hospital visits. To establish an online resource center for CS parents and caretakers to include therapeutic options, medications, latest research, quality of life issues, and healthcare providers. To establish an online virtual CS community, through which families and caretakers can seek out advice, ask questions and share their stories. To create an “Ask the Expert” portal through which families and caretakers can ask questions and have “mini consults” with an CS expert.