Welcome.
This website is to help individuals with a Fabry disease diagnosis reach out to their relatives who may have a Fabry mutation.
Why is it important to talk to your family about Fabry?
On average, for every person with Fabry, up to 5 members of their Family can also be diagnosed with the condition based on an analysis of their family tree.1
You could help them.
By telling them they may have a Fabry mutation, you could potentially help them avoid a long and difficult journey to diagnosis.1-3 Also, early diagnosis and treatment could potentially lead to a healthier future.4-6
So, what should you do if you want to help?
Step 1:
Work out who may have a Fabry mutation
On this website, you will find ‘The Fabry family tree builder’ online tool, by asking you a simple series of questions it can help you create your family tree, and automatically highlight members with a Fabry mutation. Your doctor can help you complete this or if you prefer, you can complete it alone.
To find out more about the tool click here
To read the instructions for the tool click here
To start using the tool click here
Step 2:
Talk to your family members about Fabry
There is no such thing as an average family and talking about Fabry is no different. There is no correct way to go about it – use a method of communicating that you are comfortable with.
In the resource section, you will find a leaflet you can send to your family members (‘Our family and Fabry’). There is also an example letter, if you want to write to them but can’t find the right words – you can send it as it is or use it to help you write your own.
Click here for more information on what to tell your relatives