On Thursday, September 19, 2024, the U.S. Food and Drug Administration (FDA) Patient Affairs office hosted a Patient Listening Session (PLS) with representatives of the MEF2C Haploinsufficiency Syndrome (MCHS) community. Seven parents of children and adults with MCHS shared their first-hand experiences with this disease and its impact on everyday life. Over 20 FDA offices attended to learn about MCHS and ask questions.

A milestone achievement, the PLS marked the MCHS patient community’s first engagement as a community with the FDA, and the FDA’s first engagement with the MCHS community.

As the requesting organization, the Rare Bird Foundation is immensely thankful to the parent caregivers who shared their profound testimonials on behalf of our community, as well as the entire Rare Bird team and MEF2C Foundation (UK) for eight months of intense preparation to successfully execute our PLS. Please read the detailed summary of our PLS!