March 29 , 2022
Screen4Rare website launch
International Patient Organisation for Primary Immunodeficiencies (IPOPI), International Society for Neonatal Screening (ISNS) and European Society for Immunodeficiencies (ESID) are proud to announce the new Screen4Rare website!
Screen4Rare (S4R) is a multi-stakeholder platform aiming to exchange knowledge and best practices on newborn screening (NBS) for rare diseases.
S4R advocates the importance of NBS as a key element to access to care. The group’s ultimate objective is, through policy engagement, to work towards ensuring that all babies can have equitable access to newborn screening; a life-saving tool for conditions such as severe combined immunodeficiency (SCID).
S4R seeks to promote ‘The development of appropriate, well-organised and equitable newborn screening offered on a voluntary and informed basis to families to help identify well-defined treatable conditions where it is clear that their early asymptomatic detection and treatment during childhood results in significantly improved outcome.’
Learn more about the initiative’s goals and mission, recent NBS publications as well as upcoming events at www.screen4rare.org
Exactly 4 months following the recent Rare Disease Day, Screen4Rare will celebrate International Neonatal Screening Day (INSD) on 28 June.
INSD aims to help raise awareness about the value of neonatal screening and encourage collaboration as a way of improving existing screening programmes and to take advantage of the latest scientific developments.
Stay tuned for upcoming details about the 2022 campaign.