Four Institutions Renewed as Cornelia de Lange Syndrome Centers of Excellence
June 2, 2013
The Cornelia de Lange Syndrome (CdLS) Foundation has designated Greater Baltimore Medical Center, Saint Louis University School of Medicine, Children’s Hospital of Philadelphia and the University of California, Irvine, as Cornelia de Lange Syndrome Centers of Excellence for a second five-year period.
These designations recognize continued excellence and outstanding achievement in research and/or clinical work related to CdLS, a rare genetic disorder that occurs in about one in 10,000 births. An estimated 20,000 children in the U.S. have CdLS but remain undiagnosed or without support.
“The work done by these professionals and facilities continues to mold the future of CdLS research and care and how it applies to the CdLS community as a whole,” said CdLS Foundation Executive Director Marie Concklin-Malloy. “This work allows for families nationwide to feel continued optimism. We’re excited to maintain our relationship with these professionals and to watch even greater potential unfold.”
This designation is renewable after five years, given the institution continues to meet the criteria established by the CdLS Foundation.
CdLS affects males and females equally and is seen in all races. Although individuals with CdLS range from mildly to severely affected, most have similar physical characteristics: small size, hands and feet; thin eyebrows that meet in the middle; long eyelashes; upturned nose; and thin, downturned lips.
Some individuals have limb differences, including missing fingers or arms. Common medical problems include gastroesophageal reflux, bowel malrotation, hearing loss and congenital heart defects.
For more information about CdLS, the CdLS Foundation or to make a donation to support individuals with CdLS, call the Foundation at 800-753-2357 or visit www.cdlsusa.org.
About the CdLS Foundation
Founded in 1981, the Cornelia de Lange Syndrome Foundation is a national family support organization that 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 their families make informed decisions throughout their lifetimes.
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