Lauren Edwards was diagnosed with Type 1 Gaucher disease at the age of 18. At first, she kept quiet about her diagnosis, only sharing it with her family and close friends. It wasn’t until four years later that she decided it was time to become involved in the Gaucher community and publicly advocate for rare disease awareness. Her desire to meet and learn more about the experiences of other Gaucher patients is what inspired her to create Gaucher Stories.

Gaucher Stories has been visited by people in nearly 80 countries and features submissions from patients in Norway, Spain, Venezuela, Israel and the UK, just to name a few. In 2018, Lauren was selected to be part of the National Gaucher Foundation’s first-ever Ambassador Program, and in 2020 she became a member of the board of directors of the Gaucher Community Alliance. 

Lauren in the media:

NGF Ambassador Profile
NGF Patient Journey Interview
Rare Disease Report Interview
WeGo Health Patient Leader Profile
Harness Magazine Featured article
The Mighty Featured article