Newborn Screening for MLD Update
A formal application to add Metachromatic Leukodystrophy to the UK Newborn Bloodspot (NBS) programme has…
MLD adminDecember 9, 2021
Christmas party announcement
Great News! We will be holding a virtual Christmas Party on Saturday 11th December 1pm-2pm…
MLD adminNovember 1, 2021
Support us with Amazon Smile
AmazonSmile is a really simple way for you to support MLD Support Association UK every time…
MLD adminAugust 31, 2021
Christmas party 2021
Great News! We have secured funding from the National Lottery Community Fund to hold a…
MLD adminJuly 30, 2021
Update on approval of gene therapy for MLD
NICE (National Institute of Clinical Excellence) the drug decision making body have publicly released their…
MLD adminJuly 14, 2021
MLD UK registry news
Following long discussions around the current worldwide status of Registries for MLD and because of…
MLD adminJuly 12, 2021
COVID-19 vaccinations for people with MLD
For people with MLD, the British Inherited Metabolic Disease Group (BIMDG), has stated that either…
MLD adminJanuary 22, 2021
Treating early onset MLD
We are pleased to report Orchard Therapeutics has received EC full (standard) market approval for…
MLD adminDecember 21, 2020
Lottery funding secured for care packages
Exciting news! Funding from the Coronavirus Community Support Fund, distributed by The National Lottery Community…
MLD adminSeptember 15, 2020
The Survey to understand the MLD patient and care-giver experience is now live
This research is extremely important for us to gather, so we can ensure that regulatory…
MLD adminAugust 28, 2020