Vivienne Clark Chair MLD Support Association UK Family Conference 2018

MLD Support Association UK — Scientific and Family Conference

8-9 June 2018 at Wyboston Lakes, St Neots. Another very successful Conference with thanks to all the scientists, clinicians and families who attended. We will be posting further details of the talks shortly.   Vivienne Clark, Chair – MLD Support Association UK   Prof Simon Heales – Head of Laboratory Services at GOSH   Dr […]

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Important new clinical trial for MLD

GlaxoSmithKline (GSK) has just launched a Phase 3 clinical trial to study the efficacy of a cryopreserved formulation of their gene therapy, i.e. freezing the modified cells before transfusion. Recruiting of pre-symptomatic late infantile and early juvenile patients will start immediately. This study still requires patients to travel to Milano, Italy for their transplant — […]

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Chantelle Bond cycles for MLD sufferers

Chantelle Bond attended an event put on by the National Citizen Service in Whitstable, Kent to raise awareness of MLD Support Association UK and the work we do to support sufferers and their families. She wanted to help and signed up for a Charity Bike Ride in Canterbury to raise funds for our charity on […]

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MLD Support Association UK – Family Conference 2018

The second MLD Support Association UK Family Conference will be held at Wyboston Lakes in St. Neots on Saturday 9 June 2018. The focus this year will be on Support and Care of MLD sufferers and their families, and will enable families directly affected by MLD to meet and share valuable information. There will be […]

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MLD Support Association UK – Family Conference 2016

The first MLD Support Association UK Family Conference will be held at Wyboston Lakes in St. Neots. The Conference will take place on Saturday 30 July 2016. This Conference will enable families directly affected by MLD to meet and share valuable information, as well as hearing about current and future research. There will be a […]

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Testing for MLD Carrier Status

If you are part of a family with an MLD sufferer, then you may have experienced problems getting tests carried out for carrier status.  Many GPs refuse to refer for testing often causing great distress.  If you inform you GP that you have MLD in your family e.g. brother, aunt, cousin etc. and ask to […]

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The Wellcome Trust is exploring what patients, families and carers think about different organisations accessing health data and how they use that data

As increasingly large amounts of data are collected across the health service and in biomedical research, there is growing interest in accessing information about our health, medical records and even genetic information too. A crucial part of this is hearing from families and carers of patients who have regular contact with the health service and […]

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Calling all carers of Late-Infantile MLD sufferers

A major pharmaceutical company are trying to move their Gene Therapy Research & Development program forward by gaining an understanding of the impact of the rare disease in question (Metachromatic Leukodystrophy-MLD) in patients and their carers, as well as the overall treatment pathway. To further develop the gene therapy medicines they are looking specifically for […]

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Epsom golf charity day – 14 March 2015

The Trustees would like to thank Elliott and Leanne Whattingham, Denise Hodgson, Amy, Gail and Chris for organising an all-day Golf Event at the Epsom Golf Club. Their family suffered two bereavements from MLD and organised this day in their loved ones’ honour. It was an amazing feat of organisation and they gathered together almost […]

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Charity golf day announcement

Details of our charity golf day are as follows Venue: Espom Golf Club Date: 14 March 2015 Time: 10.30–18.30

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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 treatments available.

MLD Support Association UK

MLD Support Association UK is a
Registered Charity Number 1150542

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


MLD Support Association UK
Floor 5
Amphenol Business Complex
Thanet Way

Tel: 07977 440809