Society for Mucopolysaccharide Diseases (the MPS Society)
Society for Mucopolysaccharide Diseases (the MPS Society)
Royal Free Hospital, London

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 Commissioning Group have designated this unit as one of the 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.

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.

Who are we and how can you contact us?

Postal Address
The Lysosomal Storage Disorders Unit
The Royal Free Hospital
Pond St.
London NW3 2QG
Tel: 0207 472 6409
Fax: 0207 317 7689

We are located on the second floor of the hospital. Please take the lifts or stairs by main reception to the second floor, go through the swing doors, turn left and we are on your left.

Contacts

Dr Atul Mehta MA cantab MD FRCP FRCPath, Consultant Haematologist
atul.mehta@royalfree.nhs.uk

Dr Derralynn Hughes MA DPhil FRCPath, Senior Lecturer in Haematology
d.hughes@medsch.ucl.ac.uk

Linda Richfield RGN RM, Clinical Nurse Specialist Lysosomal Storage Disorders
linda.richfield@royalfree.nhs.uk

Capt. Alan Milligan RGJ RGN, Clinical Nurse Specialist Lysosomal Storage Disorders
alan.milligan@royalfree.nhs.uk

Anne Jennings RGN, Clinical Nurse Specialist Lysosomal Storage Disorders
anne.jennings@royalfree.nhs.uk

Lyn Steel RGN, Clinical Nurse Speacialist Lysosomal Storage Disorders

June Elliot, Secretary to Dr Mehta
june.elliott@royalfree.nhs.uk

Robert Baker BSc MSc AIBMS, Senior Biomedical Scientist
rob.baker@royalfree.nhs.uk

Adele Holmes, Research Postgraduate
a.holmes@medscl.ucl.ac.uk

Patricia Pilgrim, Unit Administrator

Matthew Reed, Research Technician
m.reed@medsch.ucl.ac.uk

For more information visit our website www.royalfree.nhs.uk