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 […]
Click to Read Disability Benefits 102
Foundation NewsThis 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 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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Research Article Emphasizes the Importance of Screening for Patients with FD/MAS for Pain
Foundation News Research News Treatment NewsPain 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 SpotlightMeet 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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Mouse Models, Research, and Hope
Research NewsWe 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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International Consortium for FD/MAS Launch Meeting
Research NewsResearchers, clinicians, and advocates are invited to the International Consortium for FD/MAS Launch Meeting July 14th, 2022 at 13:00 – 16:00 GMT (9:00 – 12:00 EST) Please Register via this link.
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A Letter and a Call to Action from Mara
Patient SpotlightHi! My name is Mara Watson, I’m 12 years old and this is my story. When I was one, I fell– like any toddler would–and couldn’t walk for a week. At that time, doctors looked at my bones and diagnosed me with a non-ossified fibroma, which means that, that bone had a small part of […]
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