Our aim is to gain a better understanding of Costello Syndrome identify the best practices in treatment for our children.
Costello Syndrome is a rare syndrome which is characterised by multiple congenital anomalies including dysmorphic craniofacial features, cardiac defects, ectodermal and musculoskeletal anomalies, failure to thrive and developmental delay, and cancer.
We’re a parent to parent support group that provides information and support about Costello Syndrome to parents and health providers around the world. Our aim is to gain a to better understanding of Costello Syndrome identify the best practices in treatment for our children. But most of all we provide a support network through which families can share there own experiences and support each other through a mutual understanding. Whatever you learn from this site.. “….don’t stop asking questions!” The answers may surprise you.