Translate this page:

Cornelia de Lange Syndrome Foundation, Inc.

Last Update:6/5/2018
Contact:Bonnie Royster
Title:Executive Director
Address:302 West Main St.
Avon, CT 06001
County:Out of state
Toll Free:800-753-2357

The Cornelia de Lange Syndrome Foundation is a family support organization which exists to ensure early and accurate diagnosis of CdLS, 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.

Program Description


Awareness:  The Foundation generates awareness of CdLS in the general public and amongst interested professionals through the volunteer efforts of over fifty Awareness Coordinators. Awareness Coordinators organize public activities and arrange media events within their own communities. These parents, grandparents, family members and friends raise awareness of the syndrome and this Foundation through letter-writing campaigns, newspaper features, and presentations that speak to the personal side of CdLS.

Education & Information: From our earliest days, a hallmark service of the CdLS Foundation has been to provide detailed materials for public education and information. Since the first publication of our bi-monthly newsletter, Reaching Out, in 1977, the Foundation has kept our growing constituency up-to-date on issues relevant to the syndrome and connected to a community of families who share in the joys and sorrows of CdLS.

In addition to Reaching Out, the Foundation produces and distributes several other publications on the syndrome, and receives thousands of requests for the general information that is also available on this site.

Family Support: When someone is in need of immediate assistance, the Foundation's family service coordinators are prepared to help. Calls placed to our support lines are answered by a caring professional who is willing to listen.

Out in the community, volunteer regional coordinators assist the Foundation by reaching out to new families, uniting old ones, and providing peer-to-peer Support.

Bi-annual national conferences provide families with individual consultations, presentations from experts, and countless opportunities to meet with others in similar situations.

Research: Many of the questions asked of the Foundation pertain to the research being done in particular aspects of the syndrome. To provide the most accurate response, we rely on the expertise of some of the foremost specialists in the fields of genetics, education, medicine, and psychiatry who comprise the Clinical Advisory Board (CAB).

Family Support
Information & Referral
Rare Disorders
Counties Serviced
7172 Graham Road, Suite 100, Indianapolis, IN 46250 E-Mail:

As a matter of policy, About Special Kids does not specifically endorse any of the resources contained on our website or in our information packets. Resources are supplied for information purposes only and ASK recommends that families explore all options for assistance before making an informed choice.