![Providing Support for Families Affected by Rare Genetic Diseases]()
Albert Einstein College of Medicine and Montefiore Health System have developed a unique, multi-disciplinary program to support families affected by rare genetic diseases that cause intellectual and developmental disability (IDD). All too often, parents of children born with IDDs are simply told that their child’s disease is due to a variant of a particular gene—information that fails to address parents’ questions and concerns about their child’s future.
“Operation IDD Gene Team” was developed by Steven Walkley, D.V.M., Ph.D., and colleagues at the Rose F. Kennedy Intellectual and Developmental Disabilities Research Center (RFK IDDRC) to better inform and empower parents of children with IDDs and to inspire scientists to expand their research on individual genetic diseases. Gene Team meetings bring families of affected children together with the child’s physician, Montefiore physicians, Einstein basic scientists, and trainees. Family members share their child’s medical and personal history, physicians describe the broader clinical consequences of the condition, and scientists use lay language to inform parents about the fundamental biology of the relevant genes. Current and future treatment approaches are discussed when appropriate.
Although Operation IDD Gene Team focuses on intellectual disabilities affecting children, it could also be applied to rare genetic diseases affecting people of any age and encompass a wide variety of developmental disorders affecting any part of the body. The program is described in the Journal of Neurodevelopmental Disorders, which published online on March 15.
Dr. Walkey is professor emeritus in the Dominick P. Purpura Department of Neuroscience, of pathology, in the Saul R. Korey Department of Neurology, and director emeritus of the RFK IDDRC at Einstein. Additional Einstein authors include Sophie Molholm, Ph.D., Bryen Jordan, Ph.D., Robert W. Marion, M.D., and Melissa Wasserstein, M.D., all on the IDD Gene Team with Dr. Walkley.
Posted on: Friday, March 15, 2024