Learn and connect to understand what is known about CSS and how you can be part of moving research forward.
Children's Hospital of The King's Daughters (CHKD) in Norfolk, Virginia operates a Coffin-Siris Syndrome Program that is designed to evaluate, recommend treatment, and manage patients that have one of the rarest multiple-congenital anomaly syndromes. The Foundation has previously helped to defray the cost of this clinic for patients on a case by case basis.
The CSS registry is a clinical database that aims to look at the growth, development, and medical issues of children with CSS. There is no bloodwork or travel needed in order to enroll. For more information, please contact Dr. Samantha Vergano at Children's Hospital of The King's Daughters (CHKD).
NATIONAL ORGANIZATION FOR RARE DISORDERS
NORD acts as a central clearing house for information related to all rare diseases, including CSS. The NORD summary is a good source for basic information on Coffin-Siris syndrome.
FACEBOOK GROUP FOR FAMILIES
In addition to the Foundation's Facebook presence, there is a primary Facebook group just for families affected by CSS that facilitates connections. If you haven't already found your tribe around CSS, we encourage to join.