Welcome to the Irish MPS Society website
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