Update on including SMA in newborn screening programmes in Europe
The European Alliance for Newborn Screening in SMA, led by SMA Europe, is proud to announce that as of 1 September 2021, newborn screening has begun nationwide in Norway for all babies born from that day forward. The link to the official news in the Norwegian language can be found here: https://lovdata.no/dokument/LTI/forskrift/2021-06-11-1874
As of today 1 October 2021, the nationwide newborn screening for SMA has begun in all of Germany. After a successful pilot, led by Prof. Wolfgang Muller-Felber, the German G-BA approved SMA newborn screening last December and it will soon include all babies born in Germany.
Meanwhile, the Portuguese Neuromuscular Association is petitioning for a pilot programme to start there. Also this year, should also hopefully mean the start of pilots in France and the United Kingdom.
Finally, in Ukraine, newborn screening for SMA has been approved and is pending implementation. In May 2021 a number of organizations founded the advocacy campaign “Children, we will make it in time” (Dity, My Vstygnemo) with a goal to advocate for treatment for all SMA patients in Ukraine. In August, the campaign launched a website vstygnemo.org.ua that showcases stories and fundraising efforts of SMA patients. In September 2021, the representative of the campaign Dr. Olya Yarychkivska met with the President of Ukraine Volodymyr Zelenskyi, who promised to ensure that by the end of 2021 SMA treatments will be acquired for all patients. Read the original news from the Ukrainian President’s website:
https://www.president.gov.ua/news/volodimir-zelenskij-pidpisav-zakon-shodo-zabezpechennya-rozs-69273
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