UK SMA Newborn Screening Alliance has launched its website and social media channels to update the Community with progress towards newborn screening. Find out more about the Alliance – check out their website and follow them on social media for all the latest updates.
Read the new article published in August 2022, written in part by SMA NBS Alliance members from the University of Groningen and Novartis Gene Therapies, about the cost-effectiveness of newborn screening for SMA in the Netherlands.
Prof. Laurent Servais talks about the financial cost and quality of life of patients with SMA. He shows one family that had two children born with SMA, one was detected at birth through newborn screening and treated early, and the other child was diagnosed with SMA after symptoms already started. The positive outcomes of SMA newborn screening, in terms of impact on the children detected early, and the financial costs associated with lifelong disability are highlighted.
International Neonatal Screening Day (INSD) is an international initiative launched by the International Society for Neonatal Screening (ISNS), the International Patient Organisation for Primary Immunodeficiencies (IPOPI) and the European Society for Immunodeficiencies (ESID), working in partnership under the multi-stakeholder Screen4Rare platform to promote the importance of neonatal (newborn) screening.