A Better Method for Detecting the Risk of Vision Loss in Craniofacial FD
Foundation News Research News Treatment NewsOptic neuropathy or vision loss is a major concern for people with craniofacial fibrous dysplasia (FD). Because surgical correction can lead to further complications, management and treatment for FD related vision loss has been a challenge and source of debate for decades. A previous study found that FD lesions closing around the optic canal rarely […]
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New Research Paper Analyzes Scoliosis Treatments in FD/MAS Patients
Foundation News Research News Treatment NewsThough fibrous dysplasia/McCune-Albright syndrome (FD/MAS) is not, in and of itself, a fatal condition, the many complications associated with this chronic and rare disease can occasionally be life threatening. One example of a potentially fatal complication is scoliosis, the sideways curvature of the spine, which can affect FD patients. If left unmanaged, severe scoliosis can […]
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Possible Increased Risk of Breast Cancer in FD/MAS Patients
Foundation News Research News Treatment 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). Their findings suggest that FD/MAS patients may be more likely to develop breast cancer, and at a […]
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FDF Selected for National Institutes of Health Pilot Program
Foundation News Research NewsThe Office of Rare Diseases Research (ORDR), National Center for Advancing Translational Sciences (NCATS), NIH in collaboration with PatientCrossroads, Children Hospital of Philadelphia and WebMD, has launched a pilot program to establish a Global Rare Diseases Patient Registry and Data Repository (GRDR). The Fibrous Dysplasia is one of 15 organizations without a patient registry that […]
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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