July 7 , 2022
2nd International Neonatal Screening Day – 28 June 2022
The global IPOPI community celebrated the 2nd International Neonatal Screening Day (INSD) on 28 June. This vital campaign raises awareness of how neonatal screening can be a life changing tool that allows for early detection of rare diseases and timely access to treatment and care.
Screen4Rare, composed of the International Society for Neonatal Screening (ISNS), the International Patient Organisation for Primary Immunodeficiencies (IPOPI) and the European Society for Immunodeficiencies (ESID), is behind the INSD initiative, and invited stakeholders across the world to join the celebrations as well as raise awareness for NBS.
In 2022, various campaign materials were created including the INSD website which provides information about the history, process and current environment of NBS. Various INSD events taking place globally as well as video messages from members of the NBS community were shared on this platform. Additionally, the INSD2022 press release as well as a campaign leaflet (see below) were made available in several languages.
Furthermore, Screen4Rare organised an event with the European Union’s informal MEP Alliance for Newborn Screening (NBS) to highlight the relevance of NBS within the EU and to determine how to move forward to ensure the consistent quality of screening and good outcomes for those children identified as a result. Key stakeholders were able to engage in dialogue about the conduct of newborn screening to enhance quality and improve outcome.
During INSD 2022 through sharing many experiences of screening and learning from others, it was possible to work alongside policy makers to deliver life changing benefits for children with rare disorders.
“The International Neonatal Screening Day is a celebration of all the opportunities that a good quality screening can bring to the lives of babies affected by a rare disease, such as severe combined immunodeficiency (SCID) where treatment exists. We invite all interested stakeholders to join us on INSD 2022 and raise awareness about the many benefits and the need for equitable access to newborn screening.” Martine Pergent, IPOPI President