Carpino Supports Rare Disease Legislation – HB 5321
Posted on February 29, 2024
Dear Friends and Neighbors,
In honor of Rare Disease Day, State Representative Tracy Marra and I are proud to introduce legislation to support those with Duchenne’s Muscular Dystrophy (DMD).
(UPDATE: this bill has successfully been approved by the Public Health Committee)
DMD is a rare and fatal muscle disease that affects children from an early age. Sadly, its survival rate is strongly dependent on early detection and screening.
Our Bill: Add DMD screening to the disorders detected through the Connecticut Newborn Screening Program, providing standard screening for serious genetic disorders to all newborns born in the state.
Once a public hearing is scheduled, I encourage you to submit testimony in support of this life-changing legislation. For additional information and resources on Rare Disease Day, please visit: www.rarediseaseday.org