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Welcome to the Irish MPS Society website

The Irish Society for Mucopolysaccharide and related Diseases
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With the Country opening up, we will be continuing to follow the Covid-19 guidelines and will be hoping to resume our activities when it is safe to do so.

Dates for your diary 2019

  • 03rd – 06th 2019 May Kilcuan, Clarinbridge, Co Galway
  • 04th May 2019 AGM, Kilcuan, Clarinbridge, Co Galway
  • 15th May International MPS Awareness Day
  • 28th -30th June 2019 MPS National Conference, Coventry, UK
  • 31st August 2019 Memorial Day at Belvedere House, Mullingar, Co Westmeath
  • 08th December 2019    Christmas Party, Belvedere House, Mullingar, Co Westmeath

Vimizim News

Press Release – HSE Refuse Funding

 

The HSE have confirmed that they WILL NOT FUND the life changing drug VIMIZIM for those suffering with the ultra rare disease MORQUIO. This announcement comes 3 years after Vimizim gained licensing approval from the European Medicines Agency (EMA) on 28th April 2014. (Click below link for full text) 

Press-Release-Vimizim-Aug-2017

 

HSE Refuses funding for Vimizim

The HSE has decided to refuse to reimburse Vimizim in Ireland due to lack of clinical data and a perceived lack of value for money.

 

 

 

 

 Rare Disease Day 2015 Video

 MPS AWARENESS DAY MAY 15th 2013 VIDEO

 

 

 

The Irish MPS Society is a voluntary support group which represents and supports children and adults suffering from Mucopolysaccharide and related diseases, their families, carers and professionals.

It is a registered charity, managed by the members themselves, and entirely supported by voluntary donations and fundraising.

The aims of the Irish MPS Society are as follows:

  • to act as a support network for those affected by MPS and related diseases
  • to bring about more public awareness of MPS and related diseases
  • to promote and support research into MPS and related diseases