News

Faces of FD/MAS: William’s Story

Patient Spotlight

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 fibrous dysplasia, McCune-Albright syndrome (FD/MAS) community. Videos will be released throughout 2024 in celebration of FD/MAS Alliance’s 20th Anniversary. June is Pride month, and we’re […]

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Picture of left to right: Cindi Brandt Levin, Anne Corvelle, Tovah Burstein and Sarah Healy at the Million Dollar Bike Ride

Team FD/MAS 2024 Update!

Research News

UPDATED JUNE 18th 2024: We are excited to share that we’ve received over 150 donations for Team FD/MAS research through the UPenn Orphan Disease Center’s Million Dollar Bike Ride (MDBR). Thanks to a $30,000 match from UPENN and donations from the Association MAS/FD in France, we’ve already raised over $100,000. THANK YOU! But we’re not […]

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Team FD/MAS Dispatch!

Foundation News Research News

Following our May 21st $20 Tuesday rally, Team FD/MAS has exciting news to report! We have unlocked the UPenn match gift of $30,000!  Major thanks go to Association MAS/FD of France, led by Aurelie Lagneau who made a generous pledge that pushed Team FD/MAS over our first benchmark goal. Thanks to the 3 fundraisers, 15 […]

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Faces of FD/MAS: Corey’s Story

Patient Spotlight

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 fibrous dysplasia, McCune-Albright syndrome (FD/MAS) community. Videos will be released throughout 2024 in celebration of FD/MAS Alliance’s 20th Anniversary. In honor of Mother’s Day and […]

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Faces of FD/MAS: Nikki’s Story

Patient Spotlight

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 fibrous dysplasia, McCune-Albright syndrome (FD/MAS) community. Videos will be released throughout 2024 in celebration of FD/MAS Alliance’s 20th Anniversary. In celebration of Rare Disease Day […]

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Faces of FD/MAS: Dennis’s Story

Patient Spotlight

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 fibrous dysplasia, McCune-Albright syndrome (FD/MAS) community. Videos will be released throughout 2024 in celebration of FD/MAS Alliance’s 20th Anniversary. In celebration of FD/MAS Global Awareness […]

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Team FD/MAS 2023 Research Grants Announced

Research News Uncategorized

FD/MAS Alliance is thrilled to share that three fibrous dysplasia, McCune-Albright syndrome (FD/MAS) research grants have been awarded from Team FD/MAS’s 2023 Million Dollar Bike Ride efforts! Last spring, Team FD/MAS raised $161,620 for FD/MAS-focused research through the UPenn Orphan Disease Center’s Million Dollar Bike Ride. After careful review of nine applications by the FD/MAS […]

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Faces of FD/MAS – 2024 Photo Sharing

FDMAS Awareness Week

February 20th-27th is FD/MAS Global Awareness Week. FD/MAS Global Awareness Week is a coordinated international campaign to raise awareness of fibrous dysplasia and McCune-Albright syndrome (FD/MAS) and build support for public health and research that will improve the lives of FD/MAS patients. In 2024 we celebrate the fifth annual FD/MAS Global Awareness Week with the theme #FacesofFDMAS […]

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NIDCR Honors 25 years of FD/MAS Research

Research News Uncategorized

Immediately following the FD/MAS Community Conference, NIDCR hosted a symposium to celebrate the institute’s 25-year legacy of research to understand and treat fibrous dysplasia/McCune-Albright syndrome (FD/MAS) as part of its 75th anniversary. The event featured Nobel Laureate Brian Kobilka, M.D., who won the 2012 Nobel Prize in Chemistry for his work on G-protein-coupled receptors. The […]

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Exciting Announcement: Researchers awarded a U.S. Department of Defense grant to fund a four-year study of Fibrous Dysplasia (FD)

Foundation News Research News

Here’s some exciting news to share with families, friends, and donors! Researchers at Harvard School of Dental Medicine (HSDM) and Massachusetts General Hospital (MGH) awarded a U.S. Department of Defense grant to fund a four-year study of Fibrous Dysplasia (FD) HSDM, and MGH will receive just over $3 million for this study. “This funding will […]

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