Latest News

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MPSIV/MPSVI Resilience Workshop held Friday 8th – Saturday 9th March

This workshop was organised and run by the metabolic teams from Birmingham Children Hospital, Royal Manchester Children’s Hospital and Addenbrookes they asked for two advocacy team members from the society to help support the event – Sophie Thomas and Sally

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Ramblings of a CEO: a call to arms

As CEO of the MPS Society, and a Dad of these two “Hunter” boys, I live with a rare disease every day. These lads and all like them did not choose to have a rare disease but they do not

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New app helping Fabry’s disease patients

Patients with a debilitating rare condition have had their lives transformed thanks to a new app at Royal Free Hospital which allows doctors to monitor symptoms remotely and adjust their treatment accordingly. Since the app was launched last July about

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Treatment of thoracolumbar kyphosis in patients with MPS I

Patients with mucopolysaccharidosis type I (MPS I), skeletal disease (dysostosis multiplex) is a prominent, debilitating, condition related complication that may impact strongly on activities of daily living. Unfortunately, it is not treated with hematopoietic cell transplantation (HCT) or enzyme replacement

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MPS in numbers

896

individual and families
supported in 2015

25

rare disease supported

3,364,628

£ given research projects
between 1984-2010