The petition to fund newborn screening for SMA immediately was created by Dr. Laurent Servais and the deadline to collect signatures is 17 December 2021. If the petition reaches 10,000 signatures, the government will respond. Residents of the UK can sign the petition here. If you do not live in the UK, but know someone who is living there, ask them for their support.
While writing the Whitepaper, Spinal muscular atrophy: Screen at birth, save lives, we collected a list of publications on the topic of newborn screening and in some cases, specifically about newborn screening in spinal muscular atrophy. The list below has been extracted from the Whitepaper and will be updated as the Whitepaper is also updated over the course of 2021.
- 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 demonstrate that early detection and treatment of SMA prevents an early death or a life with a severe disability.
- As some European countries take the lead, the Alliance calls that by 2025, all children born in Europe are screened for SMA at birth and are able to access immediate treatment.
On Friday 26 March 2021 the Alliance officially launched the Whitepaper to the public with members from the SMA NBS Alliance, SMA Europe member organisations, policymakers, and other stakeholders.
The European Alliance for Newborn Screening in Spinal Muscular Atrophy (led by SMA Europe) demands that by no later than 2025, newborn screening programmes in all European countries include a test for spinal muscular atrophy for all newborn children.