Welcome to the Irish MPS Society website
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
