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Christine Lavery with PAL award

Important Announcement by the Fabry International Network Board

As recently reported, Christine Lavery, President of Fabry international Network, sadly passed away on Tuesday 19th December 2017, in hospital, surrounded by her family following a brief illness. Christine was a formidable lady who cared passionately for every MPS and FIN member both past and present. Her efforts saw her work with patients, families and … Continue reading “Important Announcement by the Fabry International Network Board”

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Christine Lavery

It is with the heaviest of hearts that we announce the death of Mrs Christine Lavery MBE, Chief Executive of the Society for Mucopolysaccharide Diseases (MPS Society) Christine sadly passed away on Tuesday 19th December 2017 in hospital surrounded by her family, following a brief illness. Christine has tirelessly championed the MPS Society from its … Continue reading “”

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Hotel

2018 FIN Fabry Expert Meeting in Lithuania

FIN Fabry Expert Meeting Vilnius, Lithuania 8th & 9th June 2018 The Board of the Fabry International Network are pleased to announce the next Fabry Expert Meeting will be held at the Vilnius Grand Resort Vilnius, Lithuania. Confirmed speakers: Professor Atul Mehta Dr Rick Steeds Dr Saunder-Plassman Dr Derralynn Hughes Dr Jacqueline Adam Martynas Davidonis … Continue reading “2018 FIN Fabry Expert Meeting in Lithuania”

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FIN Newsletter, December Cover

FIN Newsletter December 2017

Latest Newsletter available to read here 6th FIN Fabry Expert meeting, Lithuania Be Rare. Be You. Hearing loss in Children with Fabry Disease Fabry Next, ‘Wants to be your next door neighbour’ ICM, Rio Brazil News From the Pharma Industry  

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FOS Patient Report 2016 Final_cover

Latest Fabry Outcome Survey report published

Read the Fabry Outcome Survey Annual Report 2017. About FOS The Fabry Outcome Survey (FOS) is a large, global, multicentre, observational registry, sponsored by Shire, for patients with Fabry disease. The registry was established in 2001 with the aim of collecting real-world data on the long-term safety and effectiveness of enzyme replacement therapy (ERT) with … Continue reading “Latest Fabry Outcome Survey report published”

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