The African Summit on Rare Diseases
Charlotte2022-02-08T16:37:17+01:00The African Summit on Rare Diseases 2021
Focus on Fabry Leaders around the world
Charlotte2021-12-20T14:03:51+01:00Interview with Yifan Xu from Fabry China When did you join your national patient association? I joined Fabry China in 2016. At that time the community was only founded since a few months. There were only 10 members. You could hardly say it was an organization, actually more like just a [...]
News from Sangamo Therapeutics
Charlotte2021-11-04T17:15:33+01:00Sangamo Therapeutics Announces Preliminary Phase 1/2 Data Showing Tolerability and Sustained Elevated α-Gal A Enzyme Activity in Patients With Fabry Disease
News from Takeda: Update to FOS Registry
Charlotte2021-11-03T16:00:34+01:00News from Takeda: Update to FOS Registry
Webinar: Fabry & the Brain
Charlotte2022-02-08T16:37:59+01:00Fabry Findings Webinar: Fabry & the Brain now available on our YouTube Channel
Fabry Outcome Survey- Annual Report 2020
Charlotte2022-02-08T16:37:44+01:00Throughout 2020, the COVID-19 pandemic posed many challenges for both FOS and the wider Fabry disease community. The members of the FOS Steering Committee and I would like to thank all patients and caregivers involved in the registry for their extremely valuable contributions and for their continued commitment to [...]
A new tool to capture symptoms for Fabry Disease?
Charlotte2021-09-30T12:02:34+02:00In December 2020 and March 2021, people with Fabry Disease, representing five European countries shared their perspectives on standard questionnaires often used to capture the experiences of people with Fabry Disease and the ideal profile of new tools, designed to more accurately record the Fabry Disease symptoms and impacts. [...]
Fabry Findings Webinar
Charlotte2022-02-08T16:37:52+01:00Fabry Findings Webinar - October 27th, 2021 - 5.30pm - 6.30pm CEST We are happy to invite you to the first Fabry Findings Webinar with Dr Simon Korver who will present the findings from our first issue.!