News & Events2021-03-30T16:51:30+02:00

Read FIN’s latest updates, upcoming events and all news relating to Fabry Disease here

September 2021

June 2021

Nordic Rare Disease Summit

June 18th, 2021|News|

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

May 2021

Open letter to Fabry Centres

May 6th, 2021|FIN Events, FIN News|

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

March 31st, 2021|News|

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

March 19th, 2021|News|

Getting global Rare disease Insights through Technology Join the first Canadian app-based clinical trial for patient with metabolic disorders

Zamplo

March 19th, 2021|News|

Zamplo and Fabry International Network are teaming up to introduce the Zamplo app to individuals living with Fabry disease and their caregivers.

February 2021

Treatment needs and expectations for Fabry disease in France

February 19th, 2021|News|

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).

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