Below are downloadable resources to help individuals with a Fabry diagnosis reach out to talk to their family about the risk of Fabry.
Every family with Fabry has a story to tell
For individuals with a Fabry diagnosis.
This booklet is designed to help people with Fabry understand why their family members may be at risk of Fabry; the benefits of knowing about and potentially being tested for Fabry; what the next steps could be for their relatives; and the important points to convey to relatives.
Our family and Fabry
For family members who may be potentially at risk of Fabry.
These leaflets can be given to family members who may be at risk of Fabry. The leaflet explains that they may be at risk of Fabry; introduces Fabry and its symptoms; explains why they may want to consider being tested; suggests what to do next; and provides a tear-off section that they can take to their own doctor.
This is an example of a letter that can be sent to family members who may be at risk of Fabry.
The letter can be sent directly or used as a basis for your own letter if you are struggling to find the right words.