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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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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Recent Study Examines Fertility and FD/MAS
Foundation News Research NewsMany McCune-Albright syndrome (MAS) patients have questions and concerns about fertility. This is not surprising, since MAS is some combination of fibrous dysplasia (FD) bone lesions, cafe-au-lait birthmarks, and hormone imbalances. These hormone imbalances can often lead to problems with patients’ reproductive systems, especially problems like ovarian cysts. While there are ways to manage those […]
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FD/MAS Research Projects Continue
Foundation News Research NewsOne of the exciting aspects of the Million Dollar Bike Ride fundraiser is how quickly the gifts from patients, friends and family go directly towards actual FD/MAS science. In July, UPenn announced that $273,000 would be awarded to the best proposals for FD/MAS studies, and researchers from around the world have already turned in their […]
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FD/MAS Registry is Ready for Researchers
Foundation News Research NewsAs the FD/MAS community continues to share their stories and medical experiences through the FD/MAS Patient Registry, the Registry is now large enough to power academic research. “Participants have contributed over 100,000 data points by filling out the surveys on fdmasregistry.org,” said Deanna Portero, FDF Executive Director, “All that patient-provided data offers a wealth of […]
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The Dream Team: Team FD 2018
Foundation News Research NewsThe May 20th, 2018 Million Dollar Bike Ride marked Team Fibrous Dysplasia’s fourth consecutive year participating in University of Pennsylvania Orphan Disease Center’s charity ride for rare disease research. Team FD raised a record breaking $272,712.14 for FD/MAS research–more than the amounts raised in 2016 and 2017 combined. 100% of that sum will go directly to […]
Click to ReadOur Plan to Cure FD/MAS
Foundation News Research NewsBetween me, you, and anyone else who will listen, we’ve got a plan to cure fibrous dysplasia and McCune-Albright syndrome. Hint hint, you’re part of it! #cureFDMAS! [give_form id=”262″]
Click to ReadBreaking News: Increased Risk of Breast Cancer in FD/MAS Patients
Foundation News Research NewsResearchers from Leiden University Medical Center (LUMC) in the Netherlands and the National Institutes of Health (NIH) in the US have recently concluded a study researching the link between breast cancer and fibrous dysplasia and McCune-Albright syndrome(FD/MAS). Findings suggest that FD/MAS patients are more likely to develop breast cancer, and at a younger age, than […]
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