Patient information

If you are diagnosed with FD/MAS, or if you think you have FD/MAS there are some important things to realize:

  1. You are not alone! You have a rare condition, and you probably have never met another person in your life with FD/MAS, but there are various patients’ associations in the world bringing patients together.

  2. FD/MAS is so rare that you could be the first person with FD/MAS that your doctors have ever treated. Therefore, it is important that you visit a specialized doctor, preferably in a specialized hospital or center of expertise for bone disease.

We understand that a visit to a hospital can be stressful and it can be difficult to understand and remember the information that was given to you during a consult. That is why we have developed a Patient Guide: a checklist for patients to help discussion with your doctor and healthcare team and to get the most out of your doctor appointment.

You can download the checklist here:

ICFDMAS Patient-guide