The purpose of SMA Europe is to provide a framework to stimulate collaboration and accelerate translational research pathways in SMA and promote patient care.
It’s time for Europe to bridge the newborn screening gap and include spinal muscular atrophy! The European Alliance for Newborn Screening in Spinal Muscular Atrophy calls upon the government of Europe to include a test for spinal muscular atrophy in national newborn screening programmes. Worldwide newborn screening projects and programmes for SMA clearly […]
SMA Europe launched a Europe-wide survey, aimed at understanding the treatment expectations of people living with SMA, the realities of daily living, as well as their access to clinical trials and therapy. An understanding of how these expectations may vary with parameters such as age and disease severity was also sought. How we did this […]
“There is no more time to waste for babies born with SMA – newborn screening programmes for SMA in all European countries no later than 2025” Join us for this virtual event on: When? 26 March 2021 between 12:00–13:00 CET Where? Online through Webex: https://de308142546.my.webex.com/de308142546.my/j.php?MTID=md6a8d7e9e3f65923a483ac5a32a8d39d (no registration required) Access code: 181 720 9509 Password: nbs2021 […]
As part of our mission to bring effective therapies to patients in a timely & sustainable way, we joined a Clinical Trial Readiness initiative developed by Cure SMA and its Industry Consortium in the U.S. This project aims to understand and expand Europe’s current capacity to run clinical trials for potential SMA therapies. In order […]
We are very pleased to announce that, in addition to the 23 national SMA patient organisations that form SMA Europe, our NBS Alliance has been joined by 12 organisations, including other patient groups, a university and pharmaceutical comapnies. On 31st August 2020, SMA Europe launched a new European Alliance for Newborn Screening (NBS) in Spinal […]