My Fabry profile
How do I write my personal story about Fabry?
What is the Fabry profile?
The profile is a digital platform with a brief overview of Fabry disease and what this disease means to you personally. You can keep your profile for yourself, or share your profile with your loved ones if you wish.
Share your profile via WhatsApp or with a link.
Curious about what a Fabry profile looks like? Click on the button below for an example
How do you use the Fabry profile?
“I show my Fabry profile when I want someone to understand more about me and my disease. Thanks to this profile, it becomes clearer (to you) what my disease entails”
How do you create the Fabry profile?
Build your personal Fabry profile in just a few steps
- Click on the button and complete the questionnaire
- After completing the questionnaire, you will receive a personal profile link and a PIN code by email
- Send your profile link and PIN code to your loved ones by email or WhatsApp
- With your profile link and personal PIN code, others can view your personal Fabry profile
What is Fabry?
Fabry disease is a rare disease. Due to an error in one of your genes, a specific protein is not produced properly. This causes certain fats to accumulate in various organs. As a result, someone with Fabry can present with various problems, including problems with their kidneys, heart and nervous system.
The first symptoms may become visible at an early age.
