Steering Group Meeting Update
The UK SMA Newborn Screening Alliance Steering Group, which is chaired by Professor Laurent Servais (Professor of Paediatric Neuromuscular Diseases, University of Oxford) met in June to consider progress to date and to agree next steps for the campaign to #ScreenTodayForSMA. The group comprises leading clinicians with an interest in SMA, and SMA Community representatives.
Whilst the Alliance remains committed to ongoing constructive engagement with the UK National Screening Committee, we are anxious that there is no further delay to the introduction of newborn screening in the UK. There are now ten European countries that offer newborn screening for SMA, but the UK is not one of them. For every five days that a decision is delayed, a new baby born with SMA is denied the chance of a healthier future.
The Steering Group has identified work that needs to be done to collate existing evidence that will support a positive decision from the UK National Screening Committee. It has also established plans for building awareness and understanding of the need for newborn screening for SMA with parliamentary stakeholders and through the media.
We will be calling on the SMA Community to support the campaign and are reliant on your passion, enthusiasm and stories to build support for the cause. We’ll be in touch in due course to let you know how you can get involved and also to share our key messages, which can help ensure we are all aligned in what we’re asking for.
In the meantime, please do follow us and keep your eyes peeled for updates on the website and our social media feeds.