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Fabry Awareness Month

Fabry is a rare condition that has lots of challenging symptoms so early diagnosis is vital but the rarity and wide-ranging symptoms can make this difficult. This is where Fabry Awareness Month comes in. Join us in April!

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April is Fabry Awareness Month! As a rare and genetic condition, Fabry can cause patients lots of problems, so timely and accurate diagnosis is hugely important. And that’s why this month exists. So, join us in getting the Fabry disease conversation going.

What is Fabry disease?

Fabry is rare and genetic with a variety of symptoms, which means a patient’s path to diagnosis can be long.1 Yet, we’ve spoken to many brave patients who live their lives to the full. They’ve kindly shared their Fabry experiences with us to better explain this disease.

Get to know about this disease from the heroic patients living with it:

Join us!

Fabry Awareness Month is all about telling the world about this rare disease. The more people that are aware, the more patients we can help get that early diagnosis.

We’re planning the next Fabry Awareness Month and we want to let you know how you can get involved nearer the time. So, sign up to our newsletter and we’ll let you know our plans in the run up to the next Fabry awareness month.

What happens during Fabry Awareness Month?

For the past two awareness months, we’ve produced a short film series called Our Fabry Family Tree, which follows families on their journey to diagnosis, highlighting the importance of pedigree analysis and early detection of the disease.

This year we visited an Argentinian family, who were at the beginning of this diagnosis journey and going through the emotions of finding out about this rare disease. We heard from Ester, who had to watch her close and distant relatives go through painful symptoms without knowing why, Ester’s brother who is living with this disease and healthcare professionals who find that Fabry can bring families closer together.

Watch the series here

Our Fabry Family Tree Series II
Webisode 1: Finding Fabry

We meet Ester who tells us how her brother’s diagnosis has revealed Fabry as the mysterious family illness.

Our Fabry Family Tree Series II
Webisode 2: The Fabry Effect

As more and more of Ester’s family are diagnosed, we learn about the support they’ve received and the relief they now feel.

Our Fabry Family Tree Series II
Webisode 3: Our Family’s Future

Now Ester’s family have faced their diagnosis they share their hopes for the future.

Want to know more?

It doesn’t end here. Take a look at our first Fabry Family Tree series:

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I suspect other members of my family will test positive as well and that’s a path we’re still on today. It’s not been easy but we’re moving in the right direction.

Fabry Stories - Gina



Have you got a story?

Have you taken part in an awareness campaign or do you have plans to? We would love to hear about it. Raising awareness of rare diseases is so important which is why we want to make as much noise as possible about your activities, events or anything else that gets people talking about rare conditions!

Tell us your story

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