Fibrous Dysplasia Foundation’s Rare Disease Day Wrap Up
February 28th, 2017 we celebrated International Rare Disease Day, an annual awareness day dedicated to elevating public understanding of rare diseases. This year’s theme was “research,” and the Fibrous Dysplasia Foundation (FDF) participated by raising money for FD/MAS research and gathering patient stories in the scientifically designed Patient Registry. The FDF also participated in Rare Disease Week on capitol hill by speaking with lawmakers about issues that are important to our community.
One of our most exciting accomplishments from the week included that fibrous dysplasia was one of just thirteen diseases mentioned in the Senate resolution designating February 28th, 2017 as Rare Disease Day. Check out this short video to see other highlights from the week: