Latest News

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The SMC decision regarding Migalastat (Galafold)

The SMC decision regarding Migalastat (Galafold) was announced on 07 November 2016.  The relevant Detailed Advice Document can be found here.

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Christine Lavery to receive 2017 patient Advocate Leader Award

WORLDSymposium™ announces Christine Lavery, MBE, Group Chief Executive for the Society for Mucopolysaccharide Diseases, as the recipient for the 2017 Patient Advocate Leader (PAL) Award. Please go to www.WORLDSymposia.org for the full announcement.

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Migalastat for treating Fabry disease

The MPS Society is pleased to announce that NICE has given an interim recommendation for Migalastat to be used as a treatment option for Fabry disease in patients over the age of 16 years. This is not the final recommendation

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LAPLAND UK – Come meet Father Christmas on 29th November 2016

Lapland UK is a unique, award winning theatrical event that recreates Father Christmas’ arctic homeland for one month only each winter.   As guests of Father Christmas you will be given special permission to enter the secret world of the elves. Help

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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