Society for Mucopolysaccharide Diseases
MPS House, Repton Place, White Lion Road, Amersham, Buckinghamshire, HP7 9LP, UK
Tel: 0845 389 9901 Fax: 0845 389 9902
National Registered Charity No. 287034
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History
The unit was first established over twenty years ago as a service for patients with Gaucher’s disease. Following a successful trial of enzyme replacement therapy (ERT) for Anderson-Fabry disease between 1999-2002 the centre started to treat patients with this condition as well.
The National Specialist Commissioning Advisory Group www.advisorybodies.doh.gov.uk/NSCAG/ have now designated this unit as one of the six specialist units in the UK for all lysosomal storage disorders for which treatments are available.
The centre is for the management of adult patients but works closely with colleagues at Addenbrooke’s Hospital (Cambridge) and Great Ormond Street (London) for the assessment and treatment of affected children.
Patients
The unit offers diagnostic screening, assessment, treatment and monitoring. Patients can come from all over the UK. Almost all of those requiring treatment receive this in their home or at their local hospital. Patients receiving treatment attend every six months. Others attend yearly.
The unit benefits from being part of a large single-site teaching hospital with most clinical tests and an array of complementary specialities all under one roof. We have an ‘open door’ policy.
The Royal Free is in Hampstead, North London. This is outside of the central zone requiring the congestion charge. Help is also available for expenses for those who have to travel from other parts of the UK.
Who we are
Dr Atul Mehta MA FRCP FRCPath, consultant haematologist – clinical lead
Dr Derralynn Hughes MA oxon DPhil MRCPath, lecturer in haematology
Linda Richfield Senior Clinical Nurse Specialist
Sian Goodwin Clinical Nurse Specialist
Alan Milligan Clinical Nurse Specialist
Rebecca Bruce Clinical Nurse Specialist
Melissa Blincoe Clinical Nurse Specialist
Research
The unit is a major centre for research into lysosomal storage disorders including clinical trials in treatment modalities, the search for bio-markers (to measure treatment outcomes) and the aetiology of the conditions.
How to contact us
By post
The Lysosomal Storage Disorders Unit
The Royal Free Hospital
Pond St.
London NW3 2QG
Direct line and fax 0207 472 6409
By Email
Linda.Richfield@royalfree.nhs.uk
Alan.milligan@royalfree.nhs.uk
Rebecca.bruce@royalfree.nhs.uk
Melissa.blincoe@royalfree.nhs.uk
For more information visit our website www.royalfree.nhs.uk
