October 4, 2022
Screen4Rare participates in EU Presidency event on newborn screening
Martine Pergent, IPOPI President, spoke at an event organised by the Czech Republic Presidency of the EU on the topic of “Early diagnosis of patients with rare disorders in the EU: Crucial role of newborn screenings”, in Brno, Czech Republic on 23 July 2022. Ms Pergent, as IPOPI and Screen4Rare representative, took part in a panel discussion on “current experience and future developments in newborn screening”.
This technical meeting aimed to discuss progress made in the three workstreams of the Screen4Rare initiative, namely:
- Achieving consistency in the case definitions used in diseases included within national screening panels
- Developing interoperable registries to chart the outcome for individuals identified by newborn screening
- Establishing a blueprint for the ‘newborn screening pathway’ to optimise practice in the EU in this important area
Stay tuned for the announcement of the 2nd Screen4Rare and MEP Alliance for Rare Disease Newborn Screening event in November 2022!
