Written by Laura Mullen on February 14, 2020
At the head of the herd is… Bonnie Royster, Executive Director, Cornelia de Lange Syndrome (CdLS) Foundation
Bonnie most frequently checks her… Facebook
Bonnie advocates for those living with… Cornelia de Lange syndrome, or “CdLS”
Bonnie is located in… Avon, CT
How… Read More
Written by Laura Mullen on February 11, 2020
Washington, DC, February 11, 2020—The National Organization for Rare Disorders (NORD®) has announced this year’s roster of rare disease change-makers, the 2020 Rare Impact Award honorees. These exceptional individuals, organizations and industry innovators will be honored for their outstanding work for the rare disease community on May 15, 2020, in… Read More
Written by Lisa Sencen on June 23, 2016
Our biennial national family conference provides education and support to families of individuals with CdLS.
Attendees receive free head-to-toe consultations with experts from a range of medical and educational fields; attend workshops on legal concerns, educational issues and medical/behaviors challenges; and have… Read More
Written by Lisa Sencen on June 22, 2016
The CdLS Scientific and Educational Symposium brings together physicians in various clinical disciplines, scientific researchers, teachers, and allied health professionals.
Through lectures, poster session and formal discussions, attendees will learn about medical and educational issues facing individuals with the syndrome, as well as… Read More
Written by Lisa Sencen on May 9, 2015
Today is CdLS Awareness Day. Cornelia de Lange Syndrome (CdLS) is a genetic disorder present from birth, but not always diagnosed at birth. It causes a range of physical, cognitive and medical challenges and affects both genders equally (cdlsusa.org). Today’s awareness day for CdLS is to shed a light on… Read More