Welcome to the Irish MPS Society website



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) 



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












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

fundraise on idonate

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