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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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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Mouse Models, Research, and Hope

Research News

We had the pleasure of interviewing Yingzi Yang, Ph.D., Associate Dean for Research and Professor of Developmental Biology at the Harvard School of Dental Medicine. Dr. Yang is a leading scientist/researcher in skeletal biology and genetic disease studies and the recipient of a Team FD/MAS Million Dollar Bike Ride award. Dr. Yang received her B.S. […]

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Study Examines FD/MAS and Quality of Life (QOL)

Treatment News

Quality of life (QOL)—we all seek it. For patients with fibrous dysplasia and McCune-Albright syndrome (FD/MAS), a life free of pain, anxiety, and depression is often overlooked in the task of day-to-day living.  Researcher Amanda Konradi, Ph.D., Associate Professor at Loyola University, Baltimore, Maryland, published three separate studies in 2021 related to QOL. All three […]

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Over, Under, Around, or Through

Patient Spotlight

When Fred Zeth was 8 years old, his parents were told he had cancer. “Take him home and enjoy him,” the doctors told the Zeths, “because he won’t last long.” It was the late 1950s, and none of the doctors in the greater Philadelphia area had ever heard of fibrous dysplasia or McCune-Albright syndrome (FD/MAS). […]

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Global collaboration launches the International Consortium for Fibrous Dysplasia and McCune-Albright Syndrome

Advocacy News Foundation News Research News

18 February 2022 Media Contact: FD/MAS Alliance, Patiëntenvereniging Fibreuze Dysplasie, ASOCIACIÓN DE DISPLASIA FIBROSA – ADF, Fibrous Dysplasia Support Society UK, and European Association for McCune-Albright Syndrome are announcing the launch of the International Consortium for Fibrous Dysplasia and McCune-Albright syndrome Ltd. (ICFDMAS).  Fibrous dysplasia and McCune-Albright syndrome (FD|MAS) is a rare disease that […]

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