Latest News

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Lysogene Holds First Parent Advisory Board in MPS IIIA

First Advisory Board comprised of parents of children with MPS IIIA, a rare and lethal disease of the central nervous system (CNS) Advisory Board provides valuable insight concerning parents’ expectations of therapy and the urgent need to address the neurological

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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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MPS in numbers

896

individual and families
supported in 2015

25

rare disease supported

3,364,628

£ given research projects
between 1984-2010