Useful links

Although Amicus Therapeutics are not conducting any research into MLD therapies, they produce an excellent online booklet called ‘What’s missing?’ which gives a generalised description of the processes which are at fault in Lysosomal Storage disorders.

Brains for Brain Foundation are the organising body behind the European Task Force on Brain and Neurodegenerative Lysosomal Storage Diseases. They bring together a consortium of some 80 different clinicians and research scientists who are investigating this group of disorders and seeking therapeutic treatments.

Cauldwell Children provides family support services, equipment, treatment and therapies for disabled children and their families across the U.K.

The Counselling Directory is a confidential service that encourage those in distress to seek help, with links to accredited counsellors throughout Britain.

The Rainbow Trust Children’s Charity provides emotional and practical support to families who have a child with a life threatening or terminal illness.

Roald Dahl’s Marvellous Children’s Charity exist to make seriously ill children’s lives better, by providing nursing care, equipment, carers or toys.

Shire Pharmaceuticals are a global leader in clinical research into genetic therapies, and are currently involved in the investigations concerning several neurodegenerative conditions.

Together for Short Lives is the leading UK charity for all children with life-threatening and life-limiting conditions, and all those who support, love and care for them. Their work aims to ensure that children can get the best possible care, wherever and whenever they need it.


The Accessible Planet – from WAVs to stairlifts

NB We will add further useful links after talking with the organisations concerned.

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