Research

Families Research Support

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 Support Association UK Family Conference 2023

Families Research Support

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

Nicola Elson, Jackie Imrie MLD Support Association UK

Research Support

SSIEM 2024

SSIEM is the Society for the Study of Inborn Errors of Metabolism Scientists, clinicians, specialists…

MLD adminOctober 25, 2024

Neo Natal Screening MLD Metachromatic Leukodystrophy

Families Research

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

Families Research

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

Newborn Screening Collaborative Mum and Dad

Families Research

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

Families Research

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

Research

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

Research

Gene Therapy Study for Late Juvenile Metachromatic Leukodystrophy (LJ MLD)

Following the wonderful news that Gene Therapy was approved for use in England by the…

MLD adminFebruary 22, 2022

Research

NICE final guidance approves life-changing gene therapy for treating Metachromatic Leukodystrophy (MLD)

We are delighted to announce that Atidarsagene autotemcel (Libmeldy®) has been recommended as an option…

MLD adminFebruary 4, 2022

MLD Support Association UK is a registered Charity: 1150542

Government consultation opens on newborn screening for MLD

MLD Scientific and Family Conference 2025

SSIEM 2024

Orchard Therapeutics celebrates progress in advancing newborn screening for MLD on International Neonatal Screening Day

Clinical trial update from Takeda

A Rare Find: The Newborn Screening Collaborative comedy short

A Rare Find: Comedy short wants to create conversation around newborn screening

Genomics England includes MLD on its provisional list

Gene Therapy Study for Late Juvenile Metachromatic Leukodystrophy (LJ MLD)

NICE final guidance approves life-changing gene therapy for treating Metachromatic Leukodystrophy (MLD)

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