2023 Million Dollar Bike Ride Success! Thanks to YOU!
Foundation News Research News UncategorizedA total of $161,620 for fibrous Dysplasia/McCune-Albright syndrome (FD/MAS) research was raised and will fund up to 4 grants. TEAM FD/MAS was also the #1 fundraising team at the MDBR event sponsored by UPenn Orphan Disease Center. This achievement would not have been possible without you and the incredible support of the FD/MAS community. We […]
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Faces of FD/MAS
UncategorizedHow do you explain a disease that is so complex, varying, and rare? Through stories. Through narrative context. By giving the experience a face. About: Faces of FD/MAS is an FD/MAS Alliance video project envisioned and guided by the Patient Advisory Council (PAC). The project aims to capture the diverse experiences of those in the […]
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Becoming an Advocate for ELSA -Ensuring Lasting Smiles Act
Advocacy News UncategorizedHi, my name is Brittany Anderson. I had a tooth removed in 1997, when I was 13 years old, and the swelling never went down from the extraction. They then did a biopsy on the bone and I was diagnosed with a bone disease called fibrous dysplasia (FD). FD is a rare genetic disease that […]
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Fibrous Dysplasia Research Gains More Scientific Attention at Bone Mineral Research Meeting
UncategorizedThis September, FD/MAS Alliance sent Executive Director Adrienne McBride, to attend the American Society of Bone and Mineral Research (ASBMR) meeting, which Dr. Michael Collins called “a real triumph for the fibrous dysplasia/McCune-Albright syndrome (FD/MAS) research community.” Drs. Michael Collins, Acting Chair of the FD/MAS Alliance Scientific Advisory Council (SAC), and Alison Boyce, Chair of […]
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