Below are downloadable resources to help individuals with a Fabry diagnosis reach out to talk to their family who may have a Fabry mutation.
For individuals with a Fabry diagnosis.
TThis booklet is designed to help people with Fabry understand why their family members may have a Fabry mutation; 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.
For family members who may have a Fabry mutation.
These leaflets can be given to family members who may have a Fabry mutation. The leaflet explains that they may have a Fabry mutation; 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 have a Fabry mutation.
The letter can be sent directly or used as a basis for your own letter if you are struggling to find the right words.