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    Gene Therapy Study for Late Juvenile Metachromatic Leukodystrophy (LJ MLD) 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 admin
    MLD adminFebruary 22, 2022
    NICE final guidance approves life-changing gene therapy for treating Metachromatic Leukodystrophy (MLD) 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 admin
    MLD adminFebruary 4, 2022
    Announcing Family Fun Day at Drayton Manor Resort FamiliesSupport

    Announcing Family Fun Day at Drayton Manor Resort

    Thanks to National Lottery funding the MLD Support Association UK Funday will take place on…
    MLD admin
    MLD adminJanuary 26, 2022
    Newborn Screening for MLD Update Research

    Newborn Screening for MLD Update

    A formal application to add Metachromatic Leukodystrophy to the UK Newborn Bloodspot (NBS) programme has…
    MLD admin
    MLD adminDecember 9, 2021
    MLD Support Association UK Christmas Party
    Christmas party announcement FamiliesSupport

    Christmas party announcement

    Great News! We will be holding a virtual Christmas Party on Saturday 11th December 1pm-2pm…
    MLD admin
    MLD adminNovember 1, 2021
    Support us with Amazon Smile Fundraising

    Support us with Amazon Smile

    AmazonSmile is a really simple way for you to support MLD Support Association UK every time…
    MLD admin
    MLD adminAugust 31, 2021
    mld-support-association-uk-christmas-party
    Christmas party 2021 FamiliesFundraisingSupport

    Christmas party 2021

    Great News!  We have secured funding from the National Lottery Community Fund to hold a…
    MLD admin
    MLD adminJuly 30, 2021
    MLD Gene Therapy update NICE
    Update on approval of gene therapy for MLD Research

    Update on approval of gene therapy for MLD

    NICE (National Institute of Clinical Excellence) the drug decision making body have publicly released their…
    MLD admin
    MLD adminJuly 14, 2021
    MLD Support Association UK COVID-19 Vaccinations
    COVID-19 vaccinations for people with MLD Uncategorized

    COVID-19 vaccinations for people with MLD

    For people with MLD, the British Inherited Metabolic Disease Group (BIMDG), has stated that either…
    MLD admin
    MLD adminJanuary 22, 2021
    Libmeldy EU approval for treatment of early onset MLD
    Treating early onset MLD FamiliesResearch

    Treating early onset MLD

    We are pleased to report Orchard Therapeutics has received EC full (standard) market approval for…
    MLD admin
    MLD adminDecember 21, 2020
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    About Us

    MLD Support Association UK was set up to bring hope to families in the fight to eradicate Metachromatic Leukodystrophy (MLD). Our aim is to provide support by way of shared information from people in similar circumstances who have already experienced the effects of the condition and/or any new research and treatments available.

    Contact Us

    MLD Support Association UK
    1st floor
    35 Marine Terrace
    Margate
    Kent
    CT9 1XJ
    General Enquiries: 07414 529392
    Chairperson Vivienne Clark: 07977 440809
    Email: admin@mldsupportuk.org.uk

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    Professor Timothy M Cox,
    MD, FRCP, FMedSci
    Suzi Digby (Lady Eatwell) OBE
    Iain Stewart MP

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    MLD Support Association UK is a registered Charity: 1150542

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    • About MLD
      • Treatment
      • Early Intervention
      • Connie and Joe’s story
      • Camilla’s story
      • Millie’s story
      • Abbie’s story
      • Scott’s Story
      • Glossary
      • Useful links
    • About us
      • Our team
      • Conference 2025
      • Conference 2023
      • Conference 2018
    • Clinicians
    • Get involved
      • Donate
      • Fundraise for us
    • News
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