FD/MAS Global Awareness Week Social -Hosted by the PAC
FDMAS Awareness Week Research NewsJoin us Sunday, February 26th, from 2:00 – 3:30 pm EST (7:00-8:30 pm GMT) for an informal community social. We’ll start by watching a short TED Talk before we open it up to general conversation about our experiences with fibrous dysplasia, McCune-Albright syndrome (FD/MAS and life in general. It can be a powerful experience […]
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FD/MAS and Research Webinar -Postponed and Rescheduled
Research NewsPlease note: the FD/MAS and Research webinar has been postponed and rescheduled for January 13th, 2023 at 3:00 pm EST. Many community members ask: Where are we on the path to a treatment? When will I be able to take this injection as a pill? What is the focus of research on FD/MAS these days? […]
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FD/MAS Alliance’s Fiscal Year 2022 Impact Report
Foundation NewsThe FY 2022 Annual Report outlines all the accomplishments that you and our community have made possible in the last year. These pages are filled with hope and with the faces of those who know that, because of the generosity of our donors, they are not alone, and better evidence-based treatments are possible. Your generosity […]
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Take the Lead: Optimizing Palliative Care
Foundation News Treatment NewsWhile 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 NewsWe 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 NewsHave 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 NewsWe’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 NewsOn 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 SpotlightIn 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 NewsFOR 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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