8 August 2024 11:39 am
The UK National Screening Committee has recently published a blog reporting significant progress with SMA in service evaluation planning. Members of the […]
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8 April 2024 8:40 am
The results of an important study by Oliver Schawrtz et al. were published today in JAMA Pediatrics along with an […]
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12 January 2024 12:25 pm
As more countries introduce newborn screening for Spinal Muscular Atrophy (SMA), it is important that UK babies with SMA do […]
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15 November 2023 12:25 pm
The Thames Valley Pilot Study for newborn screening for SMA has had to be renamed due to its expanding focus […]
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31 October 2023 9:05 am
You may have seen in our social media feed that the UK NSC recently published a blog on work that […]
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3 October 2023 3:08 pm
The UK SMA Newborn Screening Alliance was delighted to see SMA included in the initial list of over 200 rare […]
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30 August 2023 2:57 pm
The National Board of Health and Welfare in Sweden has introduced national screening for spinal muscular atrophy (SMA) in newborns. […]
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15 August 2023 12:02 pm
On 7 August, NHS England issued a news release highlighting that 3 in 4 babies born with SMA are now […]
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4 August 2023 10:48 am
The UK NSC has published a blog today that summarises progress on the assessment of newborn screening for SMA. We […]
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5 July 2023 9:12 am
A new academic article, co-authored by Alliance Chair Laurent Servais, has been published. Laurent and his colleagues undertook a systematic […]
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12 June 2023 3:32 pm
The UK SMA Newborn Screening Alliance is focused on ensuring that a positive decision is made about newborn screening for […]
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23 May 2023 9:45 am
The All-Party Parliamentary Group (APPG) for Muscular Dystrophy has published a report on newborn screening for rare conditions. The report […]
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24 April 2023 12:49 pm
Although the UK SMA Newborn Screening Alliance originally convened prior to the pandemic, disruption due to Covid meant that the […]
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28 March 2023 12:29 pm
A new paper, developed in partnership with leading clinicians, summarises the clear, well-defined treatment pathways for babies diagnosed with SMA […]
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12:25 pm
As part of its decision-making process, the UK National Screening Committee (UK NSC) considers economic modelling to be important for […]
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10:41 am
An evidence review process is applied to all decisions that the UK NSC (National Screening Committee) makes regarding whether to […]
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22 March 2023 9:28 am
On Thursday 9th March 2023, a Westminster Hall debate was held in the House of Commons to consider “Patients with […]
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20 March 2023 1:58 pm
The UK SMA Newborn Screening Alliance is delighted that Zolgensma™ (Onasemnogene abeparvovec) is now recommended as an option for treating […]
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14 March 2023 9:40 am
Researchers at the University of Warwick, Prof Felicity Boardman and Dr Corinna Clark, are conducting a study to explore the […]
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1 March 2023 9:42 am
In March 2023, SMA UK recorded a webinar to bring the wider community up to speed on developments in relation […]
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23 January 2023 9:44 am
A new study published in The Lancet Child & Adolescent Health journal suggests that newborn screening for spinal muscular atrophy […]
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20 January 2023 9:06 am
SMA UK, Muscular Dystrophy UK and TreatSMA recently issued an update related to a decision by NHS England to temporarily […]
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11 November 2022 9:01 am
The Alliance is delighted that the UK National Screening Committee (UK NSC) review of spinal muscular atrophy (SMA) for the […]
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10 November 2022 10:26 am
A new model has been developed to explore the cost effectiveness of screening for spinal muscular atrophy (SMA) in England. […]
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13 October 2022 8:39 am
Yesterday, NHS England published its 5-year genomics strategy, Accelerating Genomics Medicine in the NHS. In conjunction with the release of […]
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6 October 2022 9:00 am
The APPG on Muscular Dystrophy has launched an inquiry to gain a better understanding of the value of newborn screening […]
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15 September 2022 12:48 pm
SMA newborn screening has now been added to the screening programme in Galicia, Spain with screening expected to start by […]
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4 August 2022 9:00 am
We’re pleased to announce the launch of our new website, and social media channels, for the UK SMA Newborn Screening […]
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19 July 2022 2:00 pm
The Alliance welcomes the establishment of the UK National Screening Committee’s (UK NSC) new Blood Spot Task Group (BSTG). There […]
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11 July 2022 3:29 pm
Our Chair, Laurent Servais, has released a video (click below) that explains the impact that treatment for SMA can have […]
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23 June 2022 3:50 pm
The UK SMA Newborn Screening Alliance Steering Group, chaired by Professor Laurent Servias (Professor of Paediatric Neuromuscular Diseases, University of […]
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20 May 2022 1:53 pm
The new chair of the UK National Screening Committee (UK NSC), Professor Sir Mike Richards, announced today the expansion of […]
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19 May 2022 1:49 pm
The Minister for Population Health, Wellbeing and Sports announced today that SMA will be included in the newborn heel prick […]
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17 March 2022 7:53 am
First UK pilot study of newborn screening for SMA was launched in Oxford. The aim of the study is to […]
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14 March 2022 7:54 am
Latest data from the SPR1NT trial has been released, again confirming the impact of Zolgensma for children at risk for […]
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23 February 2022 7:58 am
A group of healthcare professionals involved in the diagnosis and care of people SMA in Scotland published a paper in […]
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22 February 2022 7:57 am
The Guardian has published an article emphasising the importance of treating SMA pre-symptomatically, with a focus in the difference in […]
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28 January 2022 7:59 am
A new study, “Evolving approaches to prenatal genetic counselling for Spinal Muscular Atrophy in the new treatment era”, has been […]
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8 November 2021 8:00 am
Professor Laurent Servais, gave a talk at an online event entitled ‘Newborn Screening: What Should Be Screened for and How?’, […]
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9 June 2021 8:09 am
He showed three studies, with three different medications, which all show that a patient treated after the onset of symptoms […]
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