28th July 2025
Respond to the MLD newborn screening consultation
Should MLD to be added to the newborn screening programme in the UK? Have your say by submitting your comments to the MLD consultation
Stay up to date
28th July 2025
Should MLD to be added to the newborn screening programme in the UK? Have your say by submitting your comments to the MLD consultation
17th July 2025
On Wednesday 16th July our CEO, Sara Hunt, took part in a small UK National Screening Committee (NSC) stakeholder discussion group.
14th July 2025
Screen4Care has launched a recruitment for newborn screening in Ferrara, Italy and in Dijon, France – the conditions include ALD and MLD.
11th July 2025
Genetic Alliance UK have released a new policy report ‘Time to Decide: Learning from international approaches to newborn screening decision-making’.
16th May 2025
Another state in the US will start screening for Metachromatic leukodystrophy (MLD). MLD is to be added to newborn screening panel in Minnesota.
6th May 2025
The UK National Screening Committee (UK NSC) has today opened a consultation on evidence relating to newborn screening for metachromatic leukodystrophy (MLD).
23rd April 2025
We are currently working with a team of doctors who are helping to get the evidence together for when newborn screening for ALD is reviewed again by the national screening committee later this year.
23rd April 2025
Our Director of Support, Karen, presented at Addenbrookes Hospital. She spoke to the scientists in the laboratory about the importance of newborn screening for families.
23rd March 2025
Karen Harrison, our Director of Support, will be attending and presenting at the 13th International Society for Neonatal Screening (ISNS) European regional meeting in Luxembourg.
18th February 2025
Adrenoleukodystrophy (ALD) and Metachromatic Leukodystrophy (MLD) are conditions being included in The Generation Study. We hope the study will demonstrate the importance of screening for conditions at birth and results could support our newborn screening campaign for ALD.
31st January 2025
Rosenau Family Research Foundation has funded two Krabbe Disease projects in the United States.
22nd January 2025
Update from The Generation Study to share latest figures. It has been given approval by the Department of Health and Social Care to continue the study until March 2027.