Latest News

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Members needed for focus group on rare disease app

We have received a request from Eurordis (the European Rare Disease Organisation) to see if we could find 3–4 adults who are patients with Fabry, an MPS or related lysosomal storage disease to be part of an important Focus Group

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HSE refuses funding for Vimizim

A letter published on the Irish MPS Society website on 20 July confirms that the HSE has decided to refuse funding for Vimizim in Ireland. The letter states that “due to lack of clinical data and a perceived lack of

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Alexion MPSIIIB clinical trial update

Monday 17 July 2017 Alexion MPSIIIB Enzyme Replacement Clinical Trial Dr Suresh Vijay, Clinical Trial Principal Investigator at Birmingham Children’s Hospital has confirmed that it is business as usual until he gets clarification from Alexion on the status of the

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Clinical trials for MPSIIIB stopped

14 July 2017 The MPS Society has just been informed by the PI Dr Suresh Vijay from Birmingham Children’s Hospital that the NGLU clinical trials for MPSIIIB have been stopped with immediate effect. At this time neither the CRO, PPD,

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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