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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)

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.

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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.

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