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Welcome to the Irish MPS Society website

 

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Dates for your diary 2018

  • 28th – 29th April 2018 MPS I and II Expert Meeting,  The Hilton Hotel, Northampton
  • 04th – 07th 2018 May Kilcuan, Clarinbridge, Co Galway
  • 05th May 2018 AGM, Kilcuan, Clarinbridge, Co Galway
  • 15th May International MPS Awareness Day
  • 01st September 2018 Day at Belvedere House, Mullingar, Co Westmeath
  • 09th December 2018 Christmas Party at Belvedere House and Gardens, Mullingar, Co Westmeath (for further details see events page) 

 

Kilcuan Weekend 04th-07th May 2018

 

 

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

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