Fabry International Network Newsletter | June 2020

The latest newsletter from the Fabry International Network (FIN) is now available.


A word from the President


We proudly present the latest FIN newsletter.


On June 10th, we held our annual general members meeting, although we would have loved to meet in person, we were very happy to meet many of you online.


In 2020 (and beyond) FIN will focus on projects and initiatives that bring patients

together. Of course, this is part of FIN’s mission. We feel now more than ever, there is a need for patients to be part of a wider community. We aim to do so through sharing best practices, facilitating connections between Fabry patients to help combat isolation and supporting local initiatives. In case you missed the AGM, we have included most of the information in this newsletter.


The new dates for the FIN Expert meeting in 2021 are now confirmed. Make sure you save the date!


In order to make this newsletter as informative as possible we always welcome news and information from you as a caregiver, patient, patient organization and patient representative. Please send it to info@fabrynetwork.org


Stay safe and healthy!

Lut, FIN president


Contents of this issue


  • Report ECRD Meeting 2020

  • Expert meeting 2021

  • Home Infusion

  • FIN Award

  • Fabry & COVID-19 webinars & initiatives

  • Fabry Awareness Month ‘Let’s get Fabry creative’ winner

  • “I Hand the Pen To” - Interview with Fabry Leaders around the world

  • News from Chiesi

  • News from Idorsia

  • News from Avrobio

Download the newsletter >>

More information about the work that FIN is available from their website.

Visit FIN website >>


Find help and support for anyone living with Fabry disease at the MPS Society.

Support for Fabry patients >>

We are the only registered charity providing professional support to individuals and families affected by MPS, Fabry or a related disease in the UK.

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© 2020 Society for Mucopolysaccharide Diseases