Mpssociety.org.uk Website Review

we can’t cure mps and related diseases but we can be here for those that need us. join our christmas campaign and make sure we are here in save the date for the 2019 conference on paediatric and ad*lt perspectives in management and treatment of mps and related diseases. we need enthusiastic childcare volunteers to help at our conference weekends and expert meetings throughout the year. if you want to get involved and make a difference for those living with mps do*nload a fundraising pack, make a donation or find out more if you have been affected by one of the 25 mps diseases we support, or if you would simply like to learn more, our website provides lots of our advocacy support team are on hand to help affected families with anything from advice on benefits and housing to just being there to our volunteers help to make our events and conferences special for children and vulnerable ad*lts affected by mps and related diseases. if you have held a fundraising event or if you would like to make a straightforward donation, take a look at the different ways that you if you or an immediate family member has been diagnosed with mps, fabry or a related disease, we are here to support you. get in contact 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 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 like to capture a series of images showing what it is like to live with an mps disorder.. 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