Research & Clinic
Learn and connect to understand what is known about CSS and how you can be part of moving research forward.
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A Descriptive Case Report
Case report and review of the literature
A Case Report and Literature Review
Broadening the phenotype with 17 additional individuals
A case report and literature review
Other Resources
CSS Clinic
The CSS clinic is now operating at Seattle Children’s Hospital and is welcoming new in-person clinic patients. This clinic is designed to evaluate, recommend treatment, and manage patients that have one of the rarest multiple-congenital anomaly syndromes. The Foundation has helped to defray the cost of this clinic for patients on a case by case basis. From 2017-2024, Children’s Hospital of The King’s Daughters (CHKD) in Norfolk, Virginia operated a Coffin-Siris Syndrome Program.
CSS Registry
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 cssregistry@seattlechildrens.org.
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 you to join.