There are currently three CdLS Clinics in the United States. The Multidisciplinary Clinic for Adolescents and Adults at Greater Baltimore Medical Center, the Center for CdLS and Related Diagnoses at Children's Hospital of Philadelphia (CHOP) and the new CdLS Clinic at Santa Clara Valley Medical Center.
Each provides a comprehensive, evaluation for individuals with CdLS. The goals of the clinics include:
Participants receive one-to-one consultations with specialists from:
- to provide a multidisciplinary comprehensive evaluation of the individual with CdLS;
- to formulate a treatment plan for the family to share with their medical professionals;
- to increase knowledge of CdLS in caregivers, providing strategies for handling the challenges their children face, and resources to call upon when needed; and
- to collect data that will help educate physicians about common medical issues in CdLS, trends and prevention.
Multidisciplinary Clinic for Adolescents and Adults at Greater Baltimore Medical Center
March 28, 2015
November 7, 2015
This Foundation-managed, free clinic occurs twice yearly at Greater Baltimore Medical Center (GBMC) in Baltimore, MD. Foundation Medical Director Antonie Kline, M.D., director of Pediatric Genetics at the Harvey Institute for Human Genetics at GBMC, has led these free clinics since 2001. Any individual age 12 or older with CdLS can attend with their families. Clinics occur each spring and fall and can accommodate up to eight individuals. A Family Service Coordinator from the Foundation always attends to provide support.
Participants receive one-to-one consultations with specialists from pediatric ophthalmology, gynecology, pediatric dentistry, genetics, gastroenterology and nutrition, psychiatry and behavioral psychology. View the brochure.
Center for CdLS and Related Diagnoses at Children's Hospital of Philadelphia
At the Center for Cornelia de Lange Syndrome and Related Diagnoses, a team of specialists provides care to children and adults CdLS and related diagnoses.
The Center holds clinics monthly and offers comprehensive evaluations to address medical issues common to the diagnosis and those based on the child’s history. For information on the Center, visit its web page. Foundation-trained volunteers attend each clinic. Insurance authorization is required.
The CdLS Clinic at Santa Clara Valley Medical Center
Debuting in December 2014, this CdLS clinic in San Jose, CA, has a core team consisting of a geneticist, genetic counselor, neurologist, gastroenterologist, psychiatrist, nurse, and a social worker. A gynecologist will also be available. The clinic will be held twice annually and is open to all ages. A Foundation-trained volunteer attends. Insurance authorization is required.
The Foundation offers up to $250 in travel/lodging expense reimbursement to families attending any of the clinics. For more information on any of the clinics, contact Deirdre at