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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Study Examines FD/MAS and Quality of Life (QOL)
Treatment NewsQuality 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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A Patient’s Roadmap to Curing A Rare Disease
Advocacy News Foundation News Research NewsReport from the Global Genes Summit: With community, innovative treatments and cures happen! Having recently embraced my role as the new executive director of the Fibrous Dysplasia Foundation (FDF), I embarked on a steep learning curve. Fibrous dysplasia, McCune-Albright syndrome (FD/MAS) is a very complicated disease and the path to treatment can feel daunting. Luckily, […]
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Registry Data Fuels New Research
Foundation News Research News2018 is the first year that the FD/MAS Patient Registry accepted applications from researchers to use the Registry for research projects, and the immediate interest has exceeded all expectations. Thanks to the 800+ patients and caregivers who have registered in the study and contributed over 100,000 data points, researchers are using the FD/MAS Patient Registry […]
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FDF Presents Patient Registry Poster at NORD Summit in DC
Foundation News Research NewsThe Fibrous Dysplasia Foundation (FDF) strives to advance FD/MAS research and to ensure that the patient voice remains in the center of scientific advancements. In an effort to further both of these goals, FDF attended the National Organization of Rare Disorders (NORD’s) annual summit in Washington, DC this November. There, Teneasha Washington, FDF’s Research Programs […]
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Registry Week 2018 Marks Two Years of Progress
Foundation News Research NewsLast month, FDF celebrated Registry Week in honor of the 2nd anniversary of the launch of the FD/MAS Patient Registry. The 2nd anniversary is more than a symbolic landmark: it was the first “longitudinal interval,” or the first time that study participants were asked to update their information so that researchers are able to study […]
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We’re Celebrating BIG with Registry Week!
Foundation News Research NewsThe FD/MAS Patient Registry is turning 2 on Wednesday, October 31st and we’re celebrating big with Registry Week! Since the Registry launched in 2016, 680 patients and caregivers have signed up to be a part of this study and contributed over 100,000 data points. That’s 100,000 ways that scientists and researchers can learn more about […]
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Researchers Pursue a Comparative Effectiveness Study with support from the FD/MAS Patient Registry.
Foundation News Research NewsThe FD/MAS Patient Registry has been gathering data for almost a full year. In July, Fibrous Dysplasia Foundation (FDF) received the exciting news that a team of researchers and patient advocates will rely on registry data to design and develop a research proposal. Together, FDF President Catherine Fairchild, President Emeritus Amanda Konradi, Phd, Andrea Burke […]
Click to ReadA Patient’s Roadmap for Curing Rare Disease
Advocacy News Foundation NewsAdrienne McBride attends the Global Genes Summit Having recently embraced my role as the new executive director of the Fibrous Dysplasia Foundation (FDF), I embarked on a steep learning curve. Fibrous dysplasia, McCune-Albright syndrome (FD/MAS) is a very complicated disease and the path to treatment can feel daunting. Luckily, I am surrounded by an extraordinary, […]
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