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Rare 2 Aware

Ask a Fabry Expert in Fabry Awareness Month

This Fabry Awareness Month, you can join Rare2Aware live on Twitter to explore the impact that Fabry disease has on patients and their families, and to discuss the importance of talking to your relatives about your Fabry family tree. When? Thursday 20th April at 3pm BST Where? Use #letstalkfabry to be part of the conversation … Continue reading “Ask a Fabry Expert in Fabry Awareness Month”

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Fabry International Newsletter - March 2017 COVER image

FIN Newsletter March 2017

The latest FIN newsletter is now available to download here. This issue includes updates from the pharmaceutical organisations on the latest developments in Fabry treatment, the announcement that NICE are backing use of the Fabry treatment Galafold and news of the Fabry Support & Information Group Expert Conference happening in April this year.  

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5th Fabry Expert Meeting invite

Book now for 5th Fabry Expert Meeting

5th Fabry Expert Meeting 19th – 20th May 2017 The Royal Olympic Hotel, Athens, Greece The primary aim of the Fabry International Network is to facilitate collaboration between patient organisations around the world to support those affected by Fabry disease. The 5th Fabry Expert Meeting is an opportunity for experts to discuss clinical aspects of … Continue reading “Book now for 5th Fabry Expert Meeting”

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NICE recommend Migalastat for the treatment of Fabry

NICE recommend Migalastat for the treatment of Fabry disease for individuals over the age of 16 years with an amenable mutation. The National Institute for Health and Care Excellence (NICE) has today released their final decision (FED) to recommend Migalastat for the treatment of Fabry in people over 16 years of age with an amenable … Continue reading “NICE recommend Migalastat for the treatment of Fabry”

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New clinical research study for Fabry from Protalix

The BALANCE Study is a clinical research study that will compare the safety and efficacy of an investigational medication (a potential new medication) with an approved medication (agalsidase beta, also known as Fabrazyme) in patients with Fabry disease. The investigational medication is a type of medication called “enzyme replacement therapy,” or ERT. The investigational medication … Continue reading “New clinical research study for Fabry from Protalix”

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