The Red Book Survey


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The Red Book Survey

Take the survey A discussion with a family over breakfast at the 14th International Symposium on MPS and related diseases back in 2016 led to the conception of the ‘Red Book’ study by the UK MPS Society, who were awarded

Lego mini figures

Lego Masters

Paul and his son Lewis, who has MPS IVA Morquio, have been part of the most recent series of Lego Masters competing against like-minded Lego creatives to be crowned best Lego builders in the UK and Ireland. The father and


MPS Commercial are recruiting for models with MPS I/II/III

MPS Commercial are recruiting for models with MPS I/II/III for a project they are working on with a Pharmaceutical Company. We would like to capture a series of images showing what it is like to live with an MPS disorder.

Market research

Medical Market Research on Fabry Disease

We are looking for people who are over 18 and have been diagnosed with Fabry Disease to participate in a study we are currently conducting. The purpose of the research is to understand what life is like once you have

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The evaluation of Velmanase alfa for treating alpha-mannosidosis has been put on hold.

This HST evaluation has been put on hold as of 2 October 2018. The company which markets this technology (Chiesi) are currently developing an offering for submission to NHS England. Once confirmation of the submission has been received NICE will