Orphan and Rare Diseases

New Hope, Big Challenges: Newborn Screening in the Genetic Era

3:00 PM–4:00 PM Jun 5, 2019 (US - Eastern)

106AB, Level 100


Advances in genetics have altered the landscape for newborn screening, giving families new hope of detecting disease, particularly rare disease, earlier than ever. Embracing the new reality will increase opportunities for new and existing therapies, and the number of lives to save or improve seems limitless. However, major obstacles exist, including an antiquated and patchwork government system for approving newborn screening, major gaps in parental education, a public health infrastructure under constant stress and shortage of geneticists.

With Congress currently considering changes to the Newborn Screening Saves Lives Act, panelists will explore how the biotechnology community can work with partners to help fulfill the promise for patients in this new and exciting era.

Ability Level: Intermediate

Session ID: 503410