Farewell Vivienne
It is with great sadness yet complete understanding, the Board of Trustees accepted Vivienne Clark’s…
MLD adminDecember 12, 2025
Christmas care packages
Final date for registering 9th November 2025 We’re so excited to be able to run…
Rose FrancisvaOctober 29, 2025
The Connie Elson MLD Essay Prize 2025
The Connie Elson MLD Essay Prize is a newly instituted award for the best essay…
MLD adminJuly 8, 2025
Government consultation opens on newborn screening for MLD
The UK National Screening Committee (UK NSC) has launched a public consultation on whether newborn…
MLD adminMay 7, 2025
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
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