December 15, 2023

Screen4Rare continues its advocacy on newborn screening for treatable rare diseases at EU level

Screen4Rare, a multi-stakeholder initiative by IPOPI, the European Society for Immunodeficiencies (ESID) and the International Society for Neonatal Screening (ISNS), in collaboration with the Alliance on Newborn screening for rare diseases held a meeting at the European Parliament (Brussels) on December 6, 2023. The meeting focused on “The European Reference Networks and newborn screening – What has been achieved and what still needs to be done?” and was co-hosted by MEP Billy Kelleher (Renew, Ireland) and MEP Stelios Kympouropoulos (EPP, Greece) and counted with the participation of MEP Maria da Graça Carvalho (S&D, Portugal).

The meeting featured a video message from Commissioner for Health and Food Safety, Ms Stella Kyriakides, presenting how the European Commission has been and continues to work towards supporting the development of newborn screening for rare diseases from different angles. Amongst the speakers in this meeting, IPOPI was represented by Ms Leire Solis, Health Policy, and Advocacy Senior Manager, and ISNS was represented by Prof Jim Bonham, President of ISNS, and Dr Peter Schielen, office manager of ISNS. Physicians representing 3 European Reference Networks working on newborn screening explained the work on newborn screening that their ERN had been doing: Prof Fabian Hauck (ERN Rita), Prof Teresinha Evangelista (EuroNMD), and Prof Maurizio Scarpa (MetabERN).

Other patient organisations participated in this meeting, such as SMA Europe, Eurordis and the SMA Screening Alliance.

The meeting report will be available soon. Stay tuned for more information on Screen4Rare!