Read FIN’s latest updates, upcoming events and all news relating to Fabry Disease here
June 2021
Nordic Rare Disease Summit
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
AVROBIO Provides Regulatory Update on Investigational AVR-RD-01 for Fabry Disease
May 2021
MPS Spain – Fabry Congress 2021 on June 17-18, 18:00h
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!
Open letter to Fabry Centres
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)
March 2021
#Break A Sweat For Fabry
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.
Welcome to the GRIT Study
Getting global Rare disease Insights through Technology Join the first Canadian app-based clinical trial for patient with metabolic disorders
Zamplo
Zamplo and Fabry International Network are teaming up to introduce the Zamplo app to individuals living with Fabry disease and their caregivers.
Fabry Women’s Day is coming up!
April 3rd is International Fabry Women’s Day! Join us in celebrating this special day.
FIN Expert Meeting 2021
Registration now open We are very pleased to invite you to our first online FIN Expert Meeting on April 24th, 2021!
February 2021
Treatment needs and expectations for Fabry disease in France
development of a new Patient Needs Questionnaire In France, two associations actively represent Fabry patients, participate in and promote medical research: Association des Patients de la Maladie de Fabry (APMF, apmf-fabry.org) and Vaincre les Maladies Lysosomales (VML, www.vml-asso.org).
Learning from the Pandemic to Improve Care for Vulnerable Communities
The Perspectives and Recommendations from the Rare Disease Community' Raquel Castro, Erwan Berjonneau and Sandra Courbier from Eurordis have published an editorial piece on the International Journal of Integrated Care entitled: