Clinics
CdLS Clinics provide families with invaluable head-to-toe evaluations by a full complement of experts—all in one day. Currently, there are four CdLS Clinics in the United States: The Multi-disciplinary Clinic for Adolescents and Adults at Greater Baltimore Medical Center; the Center for CdLS and Related Diagnoses at Children’s Hospital of Philadelphia (CHOP); Shriners Children’s in-Salt Lake City, UT; and Boston Children’s Hospital, Cornelia de Lange Syndrome (CdLS) and Related Disorders Clinic.
At each clinic co individuals with CdLS receive one-to-one consultations with specialists who can give guidance and Sprovide strategies for handling the challenges their loved ones face, formulate a treatment plan for the family to share with their medical professionals. Data can also be collected at clinics that will help educate physicians about common medical issues in CdLS, trends,and prevention.
The CdLS Foundation never wants a family to forego care due to its cost. We can help. The Foundation has limited funds to help families living in the United States attend a CdLS clinic in the U.S. If you need assistance, don’t hesitate to get in touch with us at familyservicesteam@cdlsusa.org. For more information on any of the clinics, contact Family Services at familyservicesteam@cdlsusa.org.
Multidisciplinary Clinic for Adolescents and Adults at Greater Baltimore Medical Center
This Foundation-managed, free clinic occurs twice yearly at Greater Baltimore Medical Center (GBMC) in Baltimore, MD. Foundation Medical Director and Director of Pediatric Genetics at the Harvey Institute for Human Genetics at GBMC, Antonie Kline, M.D., has led these free clinics since 2001. Any individual age 12 or older with CdLS can attend with their family. 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 with 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, click here. Insurance authorization is required.
Shriners Hospital for Children—Salt Lake City, Utah
Shriners Children’s—Salt Lake City, Utah hosts a Cornelia de Lange Syndrome clinic in March of each year. A wide range of specialists are available for children with CdLS under the age of 18. (The specialties have included developmental pediatrics, pediatric orthopedics, neurology and GI and ENT. Other specialists include genetics, ENT, audiology, social work, a dietician and physical therapists. Children can also receive consults on devices such as custom shoe inserts and orthotics, braces, seating systems for medical strollers and wheelchairs, and other devices that improve mobility. A CdLS Family Service coordinator from the Foundation attends to provide support. Shriners Children’s provides care regardless of a family’s ability to pay or insurance status. To learn more contact family services at familyservicesteam@cdlsusa.org
The Cornelia de Lange Syndrome and Related Disorders Clinic at Boston Children’s Hospital
Boston Children’s Hospital hosts families at the Cornelia de Lange Syndrome and Related Disorders Clinic at Boston Children’s Hospital throughout the year. The clinics serve children with CdLS up to the age of 18 as well as anyone currently being followed at Boston Children’s.
The clinicians in the Cornelia de Lange Syndrome and Related Disorders Clinic have much experience caring for children with CdLS.ders. Their goal is to provide carefully coordinated multispecialty care that serve the needs of individuals with CdLS and their families. The core specialists available are in genetics, pediatric neurology, and gastroenterology. However, these specialists will collaborate with experts across Boston Children’s to ensure families receive comprehensive care.
To learn more or to request an appointment click here
