December 17, 2021

IPOPI participates in key newborn screening events

Slovenian EU Presidency: Newborn Screening Event

IPOPI, as a member of the Screen4Rare initiative, actively participated in the accompanying event of the Slovenian Presidency of the Council of the European Union 2021 on newborn screening as well as in the ISNS-MetabERN workshop on “Moving towards NBS as a system: Setting out the roadmap”. IPOPI was pleased to actively support this technical meeting together with its Screen4Rare partner organisations, ISNS and ESID and other involved stakeholders including importantly key European Reference Networks (ERN-RITA and MetabERN), among others.

Under its EU presidency, Slovenia spearheaded an initiative designed to enhance cooperation and equity in provision of newborn screening within the EU. The event brought together relevant stakeholders to share experience and explore potential future strategy. Key participants include policy makers at EU and national levels; patient organisations; representatives of the main professional organisations; regulators and HTA agencies.  To watch the recording of the meeting see here.

IPOPI and its Screen4Rare partners will continue to work with upcoming EU presidencies as well as the European Reference Networks to ensure newborn screening is prioritised in EU actions on rare diseases.

ISNS and MetabERN workshop on Newborn Screening

IPOPI’s Executive Director, Johan Prevot, was pleased to participate and moderate the conclusions of the meeting “Moving towards NBS as a system: Setting out the roadmap” organised by the International Society for Newborn Screening (ISNS), the multistakeholder initiative Screen4Rare and the European Reference Network for Hereditary Metabolic Disorders MetabERN on 11 November 2021. This was the third meeting to focus on newborn screening following the accompanying event of the Slovenian Presidency “Achieving Equity and Innovation for Newborn Screening and in Familial Hypercholesterolemia Paeditric Screening across Europe” and the launch meeting of the ERN Expert Platform for Newborn Screening earlier in September.

The meeting was held during the ISNS symposium days and saw the active participation of experts and patient representatives from all over Europe and the U.K. During the meeting, participants had the opportunity to engage in three interactive workshops focused on the workstreams defined during the previous meetings; one concerning the registries and their role in newborn screening, one on the importance of clear case definitions and one on concrete ideas on how to set up the roadmap to move towards newborn screening as a system. The comments and contributions of the participants captured during the meeting will help to set out a first draft of a roadmap to a more harmonised and equitable approach for a newborn screening system.