The Nordic Rare Disease Summit, organized as a virtual meeting on 12th and 13th of April 2021, gathered a wide range of rare disease experts, decision- and policymakers as well as representatives from NGO’s, patient organizations, academia and industry from across the Nordic countries
AVROBIO Provides Regulatory Update on Investigational AVR-RD-01 for Fabry Disease
The MPS - Mucopolisacaridosis y Síndromes Relacionados is organising their virtual international Fabry Congress 2021 on June 17-18, 18:00h. (CET)! They have an exciting program lined up with worldwide Fabry Experts in English and Spanish!
To highlight the need for continuous care and monitoring for Fabry disease patients and remind everyone of action needed for newly diagnosed patients, those in the midst of the diagnostic process or those experiencing symptoms for the first time and needing assessment We want to emphasise the need for ongoing clear and consistent communication from the centres about patients’ care and having regular appointments (in-person or telehealth)
This year we challenge you to "Break A Sweat For Fabry" and post your picture on social media with the hashtag #BreakASweatForFabry. By breaking a sweat for people who have difficulties sweating or can't sweat at all, you can show your support and help raise awareness.
ZoeInsights and Fabry International Network are teaming up to introduce the ZoeInsights app to individuals living with Fabry disease and their caregivers.
Registration now open We are very pleased to invite you to our first online FIN Expert Meeting on April 24th, 2021!
Registration now open We are very pleased to invite you to our first online FIN Expert Meeting on April 24th, 2021!
Registration now open We are very pleased to invite you to our first online FIN Expert Meeting on April 24th, 2021!
Getting global Rare disease Insights through Technology Join the first Canadian app-based clinical trial for patient with metabolic disorders
