Becoming an Advocate for ELSA -Ensuring Lasting Smiles Act

Advocacy News Uncategorized

Hi, 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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Optimizing Your In-Person and Telehealth Visits

Foundation News

Have you ever gone to a long-awaited medical appointment only to realize the provider isn’t familiar with fibrous dysplasia, McCune-Albright syndrome (FD/MAS)? Do you feel overwhelmed with health challenges, unsure which issue to address first, or how to tease one complaint out from the ways it affects the rest of your daily life and medical […]

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International FD/MAS Patient Groups Release Top Priorities for FD/MAS research

Advocacy News

FOR IMMEDIATE RELEASE Washington, DC (July 14th, 2022)   To the researchers and clinicians of the International Consortium for FD/MAS: Patient groups from around the globe including FD/MAS Alliance, Patiëntenvereniging Fibreuze Dysplasie, ASOCIACIÓN DE DISPLASIA FIBROSA – ADF, Fibrous Dysplasia Support Society UK, EAMAS, FD/MAS Brasil, and GULI (FD/MAS) Care Center have collectively identified nine […]

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