June 17, 2024

Screen4Rare and MEP Alliance on Newborn Screening for Rare Diseases hold webinar on newborn screening with leaders of three European Reference Networks

Screen4Rare initiative and the Members of the European Parliament (MEP) Alliance on Newborn Screening for Rare Diseases held a webinar on May 23, 2024. This webinar discussed the central importance of the European Reference Networks (ERNs) to the newborn screening agenda and had the participation of representatives of three ERNs:

  • Prof Maurizio Scarpa, from MetabERN (metabolic disorders),
  • Prof Teresihna Evangelista, from EuroNMD (neuromuscular disorders)
  • Prof Michael Albert, from ERN RITA (immunological disorders).

The meeting also counted the following speakers: Ms Hana Horka, from the European Commission, Prof Jim Bonham, President of the International Neonatal Screening Society (ISNS), Prof Peter Schielen, Secretary of ISNS, Johan Prevot, Executive Director of the International Patient Organisation for Primary Immunodeficiencies (IPOPI), and Leire Solis, Health Policy and Advocacy Senior Manager at IPOPI. The webinar also included a video statement from the MEP Stelios Kympouropoulos (EPP, Greece) and a written statement from MEP Brando Benifei (S&D, Italy).

The event highlighted the importance of Screen4Rare’s initiative and approach to newborn screening:

  • showcasing the key aspects of working together to provide unbiased evidence,
  • recognising that newborn screening programmes can bring many benefits but have some associated harms,
  • recognising member states’ autonomy and raising awareness of the need to update national plans.
  • valuing the importance of case definitions through real data evidence.

For further information, please stay tuned to the upcoming report of the event!