October 4, 2021
Two milestone EU Events on Newborn Screening
IPOPI supports the organization of two milestone events at EU level on newborn screening (NBS): the Launch Meeting of the ERN Expert Platform on NBS and the Slovenian Presidency Event on NBS, as part of its collaboration with the International Society for Neonatal Screening (ISNS) and European Society for Immunodeficiencies (ESID) under the Screen4Rare initiative.
Slovenian EU Presidency: Newborn Screening Event
IPOPI is delighted to share the announcement of the upcoming accompanying event of the Slovenian Presidency of the Council of the European Union 2021 on “Achieving Equity and Innovation in Newborn Screening and in Familial Hypercholesterolemia Paediatric Screening across Europe” to be held on 11 October 2021. IPOPI is 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 is spearheading an initiative designed to enhance cooperation and equity in provision of newborn screening and FH paediatric screening within the EU. All relevant stakeholders are invited to engage in this technical meeting to share experience and explore potential future strategy. Key participants will include policy makers at EU and national levels; patient organizations; representatives of the main professional organizations; regulators and HTA agencies.
The first half of the event will focus on newborn screening and follow up on many of the topics recently discussed during the Launch Meeting of the ERN Expert Platform on Newborn Screening (see below)
For more information about the event and to register, please see: https://www.nbs-fh-screening-si2021.eu/
Launch Meeting of the ERN Expert Platform on Newborn Screening
The Launch Meeting of the ERN Expert Platform on Newborn Screening was held on 14th September 2021. The meeting was co-organised by Screen4Rare (IPOPI/ISNS/ESID) and the European Commission with the support of ERN-RITA and MetabERN. The event followed on the recommendations made at an initial ERN Round Table on the topic which Screen4Rare and the European Commission held in February 2021. Representatives from several European Reference Networks (ERNs) actively took part in the meeting and agreed to start working on specific workstreams in the coming months.
IPOPI looks forward to continuing its collaboration with its Screen4Rare partner organisations, the EU Commission and the ERNs; and ultimately contribute towards more equitable access to newborn screening across the EU.