IDDRC Research Brief: Providing Support for Families Affected by Rare Genetic Diseases

March 25, 2024

AUCD's network of Intellectual and Developmental Disability Research Centers (IDDRCs) consists of 16 Centers. Fifteen Centers currently receive funding from the Eunice Kennedy Shriver National Institute for Child Health and Human Development (NICHD). IDDRCs contribute to the development and implementation of evidence-based practices by evaluating the effectiveness of biological, biochemical, and behavioral interventions; developing assistive technologies; and advancing prenatal diagnosis and newborn screening.

The RFK IDDRC unveils its groundbreaking "Operation IDD Gene Team" program developed by Dr. Steven Walkley. This multidisciplinary initiative supports families affected by rare genetic diseases causing intellectual & developmental disability (IDD).Operation IDD Gene Team brings together families, physicians, and scientists to foster understanding and empowerment. Through collaborative meetings, families share their experiences, physicians discuss clinical implications, and scientists provide insights into gene biology. Published in the Journal of Neurodevelopmental Disorders, this innovative program offers hope and guidance to families while advancing research into rare genetic diseases.

Learn more about the transformative impact of "Operation IDD Gene Team": https://tinyurl.com/32fkcfcy