MLD Scientific and Family Conference 2025
We are excited to announce that registration is now open for the MLD Scientific and…
MLD adminJanuary 6, 2025
Christmas care packages
Final date for registering 9th November 2024 We are once again lucky enough to be…
MLD adminNovember 1, 2024
SSIEM 2024
SSIEM is the Society for the Study of Inborn Errors of Metabolism Scientists, clinicians, specialists…
MLD adminOctober 25, 2024
Our weekend away at Bendrigg Trust activity centre
On an autumnal September weekend, we packed our woolly jumpers, waterproofs and sense of adventure…
MLD adminOctober 8, 2024
Orchard Therapeutics celebrates progress in advancing newborn screening for MLD on International Neonatal Screening Day
Orchard Therapeutics, recently acquired by Kyowa Kirin with the goal of accelerating the delivery of…
MLD adminJuly 15, 2024
Family activity weekend in the Lake District
We are hoping to run an activity weekend for MLD families at Bendrigg Trust in…
MLD adminApril 10, 2024
Clinical trial update from Takeda
Since the announcement that the phase 2 trial with TAK-611 for children with Metachromatic Leukodystrophy…
MLD adminMarch 20, 2024
A Rare Find: The Newborn Screening Collaborative comedy short
The UK currently screens newborns for just nine rare but serious conditions whereas the USA…
MLD adminDecember 4, 2023
A Rare Find: Comedy short wants to create conversation around newborn screening
The UK currently screens newborns for just 9 rare but serious conditions whereas the USA…
MLD adminNovember 22, 2023
Genomics England includes MLD on its provisional list
The Generation Study, a project by Genomics England, will see the genomes of 100,000 newborns…
MLD adminOctober 4, 2023