Each clinic provides a comprehensive, evaluation for individuals with CdLS. Participants receive one-to-one consultations with specialists. Specialists provide a multidisciplinary comprehensive evaluation of the individual with CdLS, formulate a treatment plan for the family to share with their medical professionals, increase knowledge of CdLS in caregivers, provide strategies for handling the challenges their loved ones face and collect data that will help educate physicians about common medical issues in CdLS, trends and prevention.
The Foundation offers a travel reimbursement to U.S. families attending any of the clinics. This reimbursement is available to a family only one time. For more information on any of the clinics, contact Deirdre 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
St. Louis Children’s Hospital, St. Louis, Missouri
St. Louis Children’s Hospital in St. Louis, Missouri hosts a Cornelia de Lange Syndrome clinic. The specialties that have attended in the past include: gastroenterology, ophthalmology, genetics, neurology, audiology, ENT and psychology.
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 Hospital for Children—Salt Lake City, Utah hosts an annual Cornelia de Lange Syndrome clinic with a range of specialists available just for children with CdLS (age 18 and younger). The specialties have included the following: pediatric orthopedics, eyes ears nose and throat, gastrointestinal, pediatrics, neurology, genetics, the orthotics and prosthetics lab and physical and occupational therapy services. Shriners Hospital for Children—Salt Lake City has been helping children with orthopedic needs regardless of ability to pay since 1925.
The Cornelia de Lange Syndrome and Related Disorders Clinic at Boston Children’s Hospital
Boston Children’s Hospital hosts the Cornelia de Lange Syndrome and Related Disorders Clinic at Boston Children’s Hospital. Families with children 18 and under and welcome, as well as patients who are currently being seen at Boston Children’s.
The clinicians in the Cornelia de Lange Syndrome and Related Disorders Clinic have much experience caring for children with CdLS and other rare genetic disorders. Their goal is to provide carefully coordinated multispecialty care to serve the needs of families. The core specialists are in genetics, neurology, and gastroenterology, but we collaborate with experts across Boston Children’s to provide comprehensive care.