A Patient’s Roadmap to Curing A Rare Disease

Advocacy News Foundation News Research News

Report from the Global Genes Summit: With community, innovative treatments and cures happen! Having recently embraced my role as the new executive director of the Fibrous Dysplasia Foundation (FDF), I embarked on a steep learning curve.  Fibrous dysplasia, McCune-Albright syndrome (FD/MAS) is a very complicated disease and the path to treatment can feel daunting. Luckily, […]

Click to Read

So, what’s the deal with this Million Dollar Bike Ride?

Foundation News Research News

For the last four years the FD/MAS community has been REALLY excited about a particular bike ride in Philadelphia. It’s not that we’re super cyclists, it’s just that this event happens to be the biggest driver of private FD/MAS research funding in the world. Through the Million Dollar Bike Ride, Team Captain Cindi Brandt Levin […]

Click to Read