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

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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

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Alexion MPSIIIB clinical trial update

Monday 17 July 2017 Alexion MPSIIIB Enzyme Replacement Clinical Trial Dr Suresh Vijay, Clinical Trial Principal Investigator at Birmingham Children’s Hospital has confirmed that it is business as usual until he gets clarification from Alexion on the status of the