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Fabry Awareness Month

April is Fabry Awareness Month.

This year, we will be sharing useful information and expert knowledge about Fabry disease gathered at our Fabry Matters conference in March, so we can highlight what life is like living with Fabry disease and provide valuable advice. You can find these presentations and supporting materials in our resources. We will also be hearing from some of our members who have shared their thoughts on living with Fabry via some short insightful video clips.

Does your doctor know about Fabry?

We’ve launched a new Fabry education tool for professionals and we need you to share it with the healthcare professionals you have contact with. Download our handy postcard about this FREE tool and send it to your GP, clinician or specialist so they can learn more about Fabry and hopefully share with their colleagues. Or ask us for copies you can post.

​How to get involved

Get social and help us raise awareness of life with Fabry disease by sharing our posts and stories on your social channels. Follow us on Facebook, Twitter and Instagram and use #FabryAwareness #WhatIsFabry when you repost. Let's get everyone talking about Fabry disease!

You can also help us support those living with Fabry disease by making a donation. Our members face so many challenges because of their symptoms and we are here to make life as easy as possible so they can live life to their full potential.​

Together we will open up and start a conversation about Fabry disease.

Read your stories


As someone who has watched his family struggle to get a diagnosis, Martin wants you to know that because symptoms vary, you may have to spend a long time finding a health professional who exactly understands your condition.


Oladapo explains that having a genetic difference doesn't mean he shouldn't be involved in society.


Dr Seema Kanwal wants you to know that Fabry symptoms are not outwardly obvious and you can't tell what someone is experiencing and to be respectful and understanding of others.

Daryll and Wendy