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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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: 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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Take the Lead: Optimizing Palliative Care

Foundation News Treatment News

While not every person with FD/MAS has pain, many in the FD/MAS community do experience significant pain, and their concerns are not always taken seriously.  Because of the varied responses that patients receive to their concerns, it’s important to understand the resources available for addressing FD/MAS-related pain.  To explore this topic, we spoke to FD/MAS […]

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$160K FD/MAS Research Funding Available

Foundation News Research News

We are delighted to share the Request for Applications for this year’s Team FD/MAS Million Dollar Bike Ride grants:   Fibrous dysplasia/McCune-Albright syndrome (FD/MAS) is a rare multisystem disease caused by somatic mutations in GNAS. The mutation results in constitutive activation of the Gsα cAMP signaling pathway. Skeletal manifestations include bone pain, fractures, deformity, and […]

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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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Research Article Emphasizes the Importance of Screening for Patients with FD/MAS for Pain

Foundation News Research News Treatment News

Pain in people with FD/MAS is common and can come and go. While not every person with FD/MAS experiences FD-related pain, every person who seeks help for FD/MAS pain should be taken seriously.  Among many clinicians, there has been a longstanding and misinformed belief that FD/MAS does not cause pain. This idea has been refuted, […]

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