Newborn Screening Collaborative

30/05/2026

Government inaction is allowing children to die from a treatable illness.

Since treatment for MLD became available on the NHS, 40 children have been diagnosed. Without newborn screening, 32 of them were sent home without access to life-saving treatment.

We’re grateful to see Simon take Katie and this issue seriously. Now we need James Murray to do the same.

In the first weeks of his new role, James Murray has the chance to help save one child every month from a preventable death.

The UK is lagging behind countries that have already begun screening for MLD based on credible, peer-reviewed, and published evidence. Yet when our government considered that same evidence, it relied on only 2 of the 23 pieces of evidence it classed as credible.

Scientists have done their job - we have the treatment and screening we need. Now it’s time for politicians to do the right thing.

I saw my constituent Katie and her son Joey recently, who I first met back in 2022. Joey has Metachromatic Leukodystrophy (MLD). He was diagnosed shortly after his second birthday, by which point he was already showing symptoms of this devastating condition.

MLD is a rare genetic disease that progressively damages the brain and nervous system and without early intervention, it is always fatal. While there is now a treatment available, it is only effective if given before symptoms begin.

The UK National Screening Committee has decided not to include MLD in the newborn screening programme, even though screening is already in place in countries such as Italy and Germany. I completely understand Katie’s (and many other families) deep concern and frustration at this decision.

I've raised this with several previous Ministers and I have now raised this issue with the new Secretary of State for Health. I also want to pay tribute to Katie, who is campaigning tirelessly so that other families do not have to go through what they have.

15/05/2026

See https://www.archangel.org.uk/nbs/ for more info.

05/05/2026

Every month, a child dies from MLD when they don’t have to. �

We have the treatment. We have the technology to screen. No more children need to die.

Start screening for MLD now Wes Streeting Sharon Hodgson Rachel Blake for Cities of London and Westminster

Ava was diagnosed in time to be able to receive treatment. She is now 19, at college and enjoying a fulfilling life. Ministers have the power to give more children a second chance now.

In memory of Teddy and all the children like him, we need to do better.

10/01/2026

Thank you to Daily Mail for highlighting the shameful state of the UK newborn screening system and to our warrior MLD parents and outstanding clinician Dr. Simon Jones. It is time for action Wes Streeting.

The NHS carries out up to five-times fewer checks on newborn babies than those performed by some other developed nations.

08/01/2026

We are deeply disappointed by the UK National Screening Committee’s decision not to add Metachromatic Leukodystrophy (MLD) to the newborn screening panel.
The committee concluded that key criteria for screening are currently not met, citing:
* Insufficient evidence on test accuracy and cut-off values for newborn screening algorithms.
* No direct evidence that early treatment following screening improves outcomes compared to treatment after symptoms appear.
* Uncertainty around cost-effectiveness of implementing screening at a national level.
While we digest the full report and prepare a detailed response, we want to reassure our community: we will not stop fighting for newborn screening for MLD.
Our next steps include:
* Requesting a meeting with the UK NSC to challenge this decision.
* Seeking more information on the potential 'In Service Evaluation'
* Engaging with Parliament to raise awareness and advocate for change.
* Continuing to amplify the urgent need for newborn screening for MLD.
Thank you to each and every one of the 501 people who took time to object to the NSC’s recommendation in August. Your voices and stories matter. Together, we will keep pushing until every child has the chance for early diagnosis and treatment.
https://view-health-screening-recommendations.service.gov.uk/metachromatic-leukodystrophy/
https://nationalscreening.blog.gov.uk/2026/01/08/introducing-equipoise-an-evaluation-of-adding-multiple-rare-conditions-to-the-newborn-blood-spot-screening-programme/

The UK NSC has published an update on a project called EquipoISE to make it easier to develop the evidence needed to make robust recommendations on screening newborns for rare diseases.

13/07/2025

While many countries now screen for over 20 conditions, only 9 conditions are included in the UK’s NHS Newborn Blood Spot Screening Programme and this urgently needs to change. Genetic Alliance have just published this excellent report exploring how the UK National Screening Committee (UK NSC) can accelerate its approach to decision-making for expanding NBS, drawing on research findings from 14 other countries. We hope this report will help move the conversation forwards with the government and health leaders. Thanks to ArchAngel Director of Newborn Screening Pat Roberts for acting as Project Advisor on behalf of the UK Newborn Screening Collaborative.

12/07/2025

Devastatingly, the UK National Screening Committee has said NO to adding MLD to newborn heel prick test. This is terrible news because
➜ Children can only be treated if diagnosed before symptoms start
➜ Without screening, they’re diagnosed too late
➜ 30 UK children have already missed out on treatment.
We have the treatment. We’re just not finding the children in time.

Parents, families, and supporters speak up NOW:
➜Respond to the consultation and demand MLD be added to newborn screening
➜Copying in your MP
➜Share this post. Use your voice.
No family should lose a child to a disease we can treat—IF WE JUST CATCH IT EARLY.

To find out more on how you can help, please follow the link https://archangel.org.uk/nbs/

10/07/2025

"...I lost my three children to this cruel disease - now I want to save others..." - Toni Mathieson, Niemann-Pick UK Chief Executive Officer

Read the full story below. We encourage you to please SHARE with your network, we must do all we can to help turn the tide for patients and families affected by this decision.

Toni Mathieson's daughter died just after her her fourth birthday. Now she is fighting for all British children with the condition to have access to a life-saving drug

07/05/2025

The UK National Screening Committee (NSC) has opened a consultation on evidence relating to newborn screening (NBS) for Metachromatic Leukodystrophy (MLD). ArchAngel MLD Trust is dedicated to ensuring that MLD is added to the UK’s NBS programme to guarantee timely diagnosis and access to life-changing gene therapy. Our MLD NBS Steering Group, made up of highly specialist scientists and clinicians, are carrying out the work required and we will keep the community updated as to how you can help contribute to the consultation process🙏💜
https://view-health-screening-recommendations.service.gov.uk/metachromatic-leukodystrophy/.

04/12/2024

We are only as strong as the fantastic groups that make up the Newborn Screening Collaborative - thank you to the lovely people at Children's Heart Federation for the support!

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