News

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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2023: BIG Impact, BIG gratitude, BIG plans!

Advocacy News

Happy holidays! Thank you for being an important part of the FD/MAS Alliance in 2023. From the FD/MAS Community Conference to federal funding announcements, and being highlighted at the NIH, it has been a terrific year and you are a key part of our strong community. Together, in 2024 we will accomplish even more. On […]

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Kelly Cohen – a Mother, a Nurse, and a Champion for FD/MAS

Patient Spotlight

Kelly’s connection to the FD/MAS began with the birth of her second child, Liam who entered the world at just 4 pounds and began to lose weight instead of gaining it. Although she no longer works professionally as a nurse, she uses her training, skills, and dedication to advocate for her son and others with […]

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Patient Spotlight: Mara Watson

Patient Spotlight

Mara’s battle with FD/MAS began when she was a toddler. After a seemingly minor fall she avoided putting any weight whatsoever on her leg and foot. A doctor’s appointment revealed a peculiar spot on her fibula that was diagnosed as benign.  Mara is now a resilient thirteen-year-old who has displayed an indomitable spirit throughout her […]

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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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Faces of FD/MAS: Camryn’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. This giving season, we’re focusing on the story of Camryn Berry, an FD/MAS patient, and 3rd-year Ph.D. student studying […]

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Camryn Berry’s Experience at the FD/MAS Community Conference

Patient Spotlight

This giving season, we’re focusing on the story of Camryn Berry, a patient and a third year P.h.D. student researching pain mechanisms of fibrous dysplasia, McCune-Albright syndrome (FD/MAS). Camryn recently attended the FD/MAS Community Conference and shared a bit about her experience: I attended the Fibrous Dysplasia/McCune-Albright Syndrome (FD/MAS) Community Conference in September of 2023 […]

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