CdLS Research

Mission Statement:
The Cornelia de Lange Syndrome (CdLS) Foundation is a family support organization which exists to insure early and accurate diagnosis of the syndrome, PROMOTE RESEARCH INTO THE CAUSES AND MANIFESTATIONS OF THE SYNDROME, and help people with a diagnosis of CdLS and others with similar characteristics, make informed decisions throughout their lifetime.

The CdLS Foundation is the only organization in the US that is dedicated to improving the lives of people with CdLS. We are proud to share that the National Institutes of Health have awarded Dr. Ian Krantz $1,000,000 specifically for CdLS. We are also pleased to share that the Board of Directors has allocated $25,000 of our annual budget for smaller research projects to investigate issues that may make a difference in the daily lives of all people with CdLS.

This foundation should be the primary contact for everyone who has an interest in CdLS. It is the Foundation's role to make sure that families’ confidentiality and trust are protected and that researchers are operating with our best interests in mind. It is equally important that there be an open forum for discussion regarding improving our services or questioning our work whenever needed.

Your feedback is important - children with CdLS depend on it.

Grants to Support Research into Cornelia de Lange Syndrome:

There are many unanswered questions and issues related to CdLS. We appreciate your interest in this rare and interesting syndrome. If you have a project related to CdLS and would like it to be officially "sanctioned" by the CdLS-USA Foundation, publicized in our correspondence and included in our national meeting presentations, please submit a research application (download application pdf here) to our Research Advisory Committee. There are no funds available to support international projects at this time. Each concise and well-thought-out project description will be considered. Please note that approval by your hospital IRB (or independent IRB if unaffiliated) is mandatory; concurrent submission is acceptable, but we cannot sanction any project not IRB-approved.

Questions should be addressed to:

Research Advisory Committee
c/o Julie Mairano, Executive Director
Cornelia de Lange Syndrome Foundation
302 West Main Street, #100
Avon, CT 06001-3681
Tel: 1-800-753-2357
Fax: (860) 676-8337
E-mail: info@cdlsusa.org

Invitations to Participate in Research:

CdLS Foundation Funded Projects, Participants Invited

Research Articles:

The Cornelia de Lange Syndrome Gene is Identified
CdLS SAC Awarded NIH Research Grant
Board Of Directors Allocates Funds For Research