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Latest news

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

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!

#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.

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)

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!

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

More News & Events

What is Fabry Disease?

Fabry disease is a rare, genetic condition which is estimated to affect around 1 in 100,000 people.

Fabry Numbers

Making An Impact In Our Communities

0mil
worldwide living with a rare disease
0+
Rare Diseases Identified
0%
Rare Disease are genetic

FIN members

Humanitarian Programs

To help extend treatment and specialty care to people throughout the world with rare diseases including lysosomal storage disorders you can rely on humanitarian programs.

Find out more

Young Adults Community

Fabry International Network is very committed to training the next generation of patient advocates and also providing a platform for young adults to get in contact with each other, to share their experiences and learn from each other.

Find out more

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