Latest News

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An update on the BioMarin MPS IIIB clinical development programme

An update for patient associations and families from BioMarin April 2017 BioMarin have received a number of enquiries regarding the status of their clinical development program in Sanfilippo Syndrome Type B (MPS IIIB). The program, which involves multiple centres around

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Join us to celebrate MPS Awareness Day at Gulliver’s Land, Milton Keynes

To celebrate MPS Awareness Day 2017 we are offering lucky families the opportunity to visit Gulliver’s Theme Park in Milton Keynes on Sunday 14th May 2017. If you’re looking for a family fun-filled day out for you and your little ones

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Ask a Fabry Expert in Fabry Awareness Month

This Fabry Awareness Month, you can join Rare2Aware live on Twitter to explore the impact that Fabry disease has on patients and their families, and to discuss the importance of talking to your relatives about your Fabry family tree. When?

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Press release – NICE and NHS England’s decision to deny access to new medicines is no April Fool’s Joke

Due to the lack of response to our initial press release, which was released three hours before the tragedy in Westminster on 22 March 2017 and understandably was not a priority at this time, we are reissuing this 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