My Community

30-year old assistant Manager
Diagnosed with Gaucher at 15
Avid Photographer
Passionate about Technology
Behind the Camera
An avid photographer, Pierre Joly is more used to being behind the camera than in the spotlight, but here he reveals how his twin passions of technology and photography have led him to some of the most remote spots in northern Ontario. "There are sights that most people have not seen and I would like to show it to everybody."
The Busiest Guy You'll Ever Meet
Being diagnosed with Gaucher disease at the age of 15 has not prevented Pierre Joly from being one of the busiest guys you might ever meet. Read story>>
Joining Art and Technology
On top of his already busy schedule, Pierre also finds the time to indulge in his true passion, photography. Read story>>
Going the Distance
Given Pierre's busy schedule and extensive travelling, it seems like having Gaucher disease has not slowed him down.Read story>>
New treatment equals new freedom
However, since that time, Pierre has entered the Eliglustat clinical trial program. Read story>>

Check back soon to read more about Sarah.

Patient Stories are examples based on aggregate medical data. The characters represented are not actual Gaucher patients. Their stories are inspired by those of real Gaucher patients.