Latest News

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Ramblings of a CEO Part 1

Our new Chief Executive has been reporting back on his experiences and what he is learning at the 14th Annual WORLDSymposium. So what have I learned so far from the WORLD gathering? 1. The passion to make a difference here

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Protalix BioTherapeutics’ pegunigalsidase alfa Receives Fast Track Designation from the U.S. Food and Drug Administration

Fast Track designation highlights high unmet medical need in the treatment of Fabry disease Protalix BioTherapeutics announced that the U.S. Food and Drug Administration (FDA) has granted Fast Track designation to pegunigalsidase alfa, or PRX-102, the Company’s plant cell-expressed recombinant,

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Important Announcement by the Society For Mucopolysaccharide Disease

As recently reported on the MPS Society website, Christine Lavery, our Group Chief Executive, sadly passed away on Tuesday 19th December 2017, in hospital, surrounded by her family following a brief illness. Christine tirelessly championed the MPS Society from its

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MPSII Clinical Trial Update – First potential treatment for children with Hunter disease and cognitive impairment misses its primary endpoints

The Society for Mucopolysaccharide Diseases (MPS Society) is disappointed to learn that Shire’s SHP609 clinical trial has missed its Primary Endpoints and failed to demonstrate Stabilization of Cognitive Decline in Children with Hunter Disease as stated in their press release

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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