Faces of FD/MAS
UncategorizedHow do you explain a disease that is so complex, varying, and rare? Through stories. Through narrative context. By giving the experience a face. About: 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 […]
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Exciting Announcement: Researchers awarded a U.S. Department of Defense grant to fund a four-year study of Fibrous Dysplasia (FD)
Foundation News Research NewsHere’s some exciting news to share with families, friends, and donors! Researchers at Harvard School of Dental Medicine (HSDM) and Massachusetts General Hospital (MGH) awarded a U.S. Department of Defense grant to fund a four-year study of Fibrous Dysplasia (FD) HSDM, and MGH will receive just over $3 million for this study. “This funding will […]
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FD/MAS Research Funding Opportunity & Webinar – PRMRP Information
Research NewsThe FD/MAS Alliance is alerting you to a 2023 funding opportunity: Fibrous dysplasia/McCune-Albright Syndrome was again named as one of the disease topic areas eligible for dedicated Department of Defense (DOD) research funding through the Peer Reviewed Medical Research Program (PRMRP). The mission of the PRMRP is to encourage, identify, select, and manage medical research […]
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FD/MAS Research Grants Announced
Research NewsFD/MAS Alliance is thrilled to share that two FD/MAS research grants have been awarded from the 2022 Million Dollar Bike Ride! Last spring, Team FD/MAS raised $160,000 for FD/MAS-focused research through the UPenn Orphan Disease Center’s Million Dollar Bike Ride. After careful review of several applications by the FD/MAS Alliance’s Scientific Advisory Council and the […]
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FD/MAS Global Awareness Art Competition
FDMAS Awareness WeekFebruary 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 2023 we celebrate the fourth annual FD/MAS Global Awareness Week with the them #myFDMASlife […]
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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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Welcoming Audrey Thurm to the Medical Advisory Council
Foundation NewsWe are delighted to announce the addition of Audrey Thurm, Ph.D., to our Medical Advisory Council. Dr. Thurm is a psychologist at the NIH and has worked closely with Medical Advisory Chair Dr. Alison Boyce to provide support to the families enrolled in the FD/MAS Natural History study that Dr. Boyce oversees at the NIH. […]
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Our In-Person Conference 2023 – Help Pick Our Theme
Foundation NewsFD/MAS Alliance is planning our long-awaited, in-person conference to be held September 8-11th, 2023. We will be meeting in the DC area and are in the early stages of planning this event. You can help us plan! Fill in this 1-question, 1-minute poll before December 15, and help pick the theme of the conference! Loading…
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With your help, we did it! Giving Tuesday 2022
Foundation NewsMany thanks to everyone who participated in Giving Tuesday 2022. As you know, our goal on Giving Tuesday was to raise $25,000, and with your help, we did it! Contributions to the Giving Tuesday campaign – Hope is on the Horizon – enable us to advance research, provide education, promote the development of evidence-based treatments, […]
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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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