March 31, 2025

IPOPI speaks at the 13th Congress of the International Society for Neonatal Screening

Leire Solis, IPOPI advocacy and health policy director, took part in the 13th Congress of the International Society for Neonatal Screening (ISNS) on March 26 2025, in Luxembourg. The session in which Leire took part discussed the activities developed by ISNS, IPOPI and ESID under the umbrella of Screen4Rare. Leire provided the patient perspective on the future of newborn screening. Other speakers of the session touched upon:

  • Screen4Rare activities, covered by Prof Jim Bonham, ISNS President
  • Identification of good and best practices on newborn screening, by Dr Peter Schielen, ISNS Secretary
  • The importance of case definitions in newborn screening, to understand who is the patient, by Dr Annet Bosch, UMC Amsterdam (the Netherlands)
  • Data-driven guidance of a screening strategy for rare diseases, by Prof Ulrike Mütze, Heidelberg University Hospital (Germany)
  • The EU advisory committee on newborn screening under the umbrella of the ERNs, Prof Andrea Bordugo, University of Verona (Italy).

The discussions held after the presentations showed the need for continuing advancing on the promotion of equitable newborn screening for treatable rare diseases in the EU and the importance of having a committee that would support decision-makers in having the most updated and unbiased information to take the best decisions for their national context.