News

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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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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Watch the Launch Meeting for International Consortium for FD/MAS

Foundation News Research News

On July 14th 2022, the International Consortium for FD/MAS (ICFDMAS) held a launch meeting open to all researchers, clinicians, and advocates. The meeting agenda included an introduction to the ICFDMAS, a presentation from the collaborating patient groups from around the globe, and updates on clinical and basic research in the field of FD/MAS. The meeting […]

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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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Disability Benefits 102

Foundation News

This workshop is 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 Disability Income (SSDI) and Medicare. FD/MAS Alliance is […]

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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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Miss (and Ms.) Amazing

Patient Spotlight

Meet Ellasyn Berry of Little Chute, Wisconsin.  At 13 years old, she is a rollercoaster rider, a swimmer, a Bath & Body Works shopper, a future anesthesiologist, and living every day with McCune-Albright syndrome (MAS) and Polyostotic Fibrous Dysplasia (PFD).  Ellasyn is surrounded by family that she lovingly describes as “chaotic.” Mom (Leah) works for […]

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