Living with alpha mannosidosis or MPS VI? We need you!


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Living with alpha mannosidosis or MPS VI? We need you!

MPS Commerical recruitment We currently have 2 research studies that we need your help with. Alpha-mannosidosis research study We would like to get information on alpha mannosidosis, how it feels for you to live with the disease, and how this

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Patients and health care professionals, do you report side effects?

The European Medicines Agency (EMA) are asking for patients and health care professionals to complete a survey on reporting adverse drug reactions (side effects) and additional monitoring. The survey can be downloaded as a PDF or completed online here: Link to

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Irish MPS Society pledges to work hard to reverse the HSE decision on Vimizim

The Irish MPS Society has expressed its disappointment in the HSE’s decision to deny access to Vimizim in Ireland. Read their full press release below. HSE Refuse Funding The HSE have confirmed that they WILL NOT FUND the life changing drug VIMIZIM for those

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Members needed for focus group on rare disease app

We have received a request from Eurordis (the European Rare Disease Organisation) to see if we could find 3–4 adults who are patients with Fabry, an MPS or related lysosomal storage disease to be part of an important Focus Group

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HSE refuses funding for Vimizim

A letter published on the Irish MPS Society website on 20 July confirms that the HSE has decided to refuse funding for Vimizim in Ireland. The letter states that “due to lack of clinical data and a perceived lack of