News & Events2021-12-22T11:00:14+01:00

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

December 2021

News from Freeline

December 13th, 2021|Industry News, News|

Freeline announced new data from its ongoing Phase 1/2 MARVEL-1 dose-finding clinical trial of FLT190 for the treatment of Fabry disease and provided updates on its pipeline programs. 

News from Idorsia

December 13th, 2021|Industry News, News|

Idorsia Ltd (SIX: IDIA) today announced that after the planned interim analysis of the open-label extension (OLE) of the Phase 3 MODIFY study with lucerastat for the treatment of adult patients with Fabry disease, the study will continue.

November 2021

October 2021

October 20th, 2021|News|

Rare disease community calls for additional doses of COVID-19 vaccine to protect the most vulnerable and extra measures to vaccinate more European citizens

September 2021

Fabry Findings Webinar

September 28th, 2021|Uncategorised|

Fabry 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.!

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|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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