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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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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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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Disability Benefits 101 and 102

Advocacy News Foundation News

We’re pleased to share the recording of this 2 part workshop designed to help individuals with disabilities reach a greater understanding of some of the different government benefits available.  These benefits are discussed in detail in clear, concise language, including how to qualify for, and the differences between, Supplemental Security Income (SSI), Medicaid, Social Security […]

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Meet the PAC!

Advocacy News Foundation News Patient Spotlight

In July 2022, FD/MAS Alliance launched our inaugural Patient Advisory Council, a group of community advisors and organizational ambassadors for the FD/MAS Alliance.  Without the trust, respect, support, and engagement of the FD/MAS community, our work cannot be successful.  The community members who stepped forward to form this first class of ambassadors represent some of […]

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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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FD/MAS and QOL

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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The ABCs of FD/MAS

Patient Spotlight

One parent’s tips on how to talk to adults about your child’s FD/MAS diagnosis* The first time I took my daughter to her best friends’ house for a playdate I gave her a kiss and told her to be careful and follow the rules, because she already knew her limitations and how to keep herself […]

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