21st August 2026
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21st August 2026
18th August 2026
27th July 2026
We have been fighting to add adrenoleukodystrophy (ALD) to the UK Newborn Screening Blood Spot Programme since 2017 and submitted extensive additional evidence to the National Screening Committee (NSC) this month.
13th February 2026
‘The Grey Zone Project: Risk-Based Classification of ABCD1 Variants in X-Linked Adrenoleukodystrophy’ research article will be used as part of our evidence to add ALD to the newborn screening programme in the UK.
12th February 2026
Several news articles have been published which highlight the importance of newborn screening for MLD from a family’s perspective and in a professional’s opinion.
10th February 2026
We are saddened to share the news that the UK National Screening Committee have made the decision not to add Metachromatic Leukodystrophy (MLD) to the newborn screening programme in the UK.
5th February 2026
Our Director of Support, Karen, is attended the Specialised Healthcare Alliance (SHCA) quarterly meeting in Millbank House on the Parliamentary Estate.
18th December 2025
Secretary Kennedy Metachromatic Leukodystrophy to Newborn Screening Recommended Uniform Screening Panel in US.
24th October 2025
Our CEO, Sara, attended the annual International Consortium on Newborn Sequencing (ICoNS) conference in London.
22nd October 2025
Our Director of Support, Karen, attended the Meeting of the APPG (All Party Parliamentary Group) on Genetic, Rare and Undiagnosed Conditions on the topic of Newborn Screening.
27th September 2025
Karen presented at the ‘Leukodystrophies: Novel perspectives on treatments and disease monitoring’ course in Paris held by Professor Fanny Mouchel and attended by many leukodystrophy specialists.
26th September 2025
Families being offered maternity care at Sunderland Royal Hospital and South Tyneside District Hospital are among those being invited to take part in the Generation Study.