News

Fall Webinar Success Leads to Hopes for Future Programming

Advocacy News Foundation News Treatment News

This past fall, FDF livestreamed two Educational Webinars over Facebook for free. As an organization, FDF thought it was important to bring educational programming to the fibrous dysplasia and McCune-Albright community and we were thrilled to bring the experts to our community. Two webinars took place and were well attended by the patient community. A […]

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A New Clinical Pathway for FD/MAS

Foundation News Treatment News

This spring, a new Clinical Pathway for FD/MAS Care was published by the International Consortium of FD/MAS Researchers. This news is equally exciting for the patient community as it is for this renowned group of researchers and patient advocates who have worked on the Clinical Pathway project for several years. Along with other international patient […]

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New Research Paper Analyzes Scoliosis Treatments in FD/MAS Patients

Foundation News Research News Treatment News

Though 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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Missed the Conference? You Can Still Learn From the Experts

Advocacy News Foundation News Patient Spotlight Research News Treatment News

Patient and researcher meetings are important because they allow engaged members of a rare disease community to organize, strategize, and take action. This year, patient and family meetings were held in Maryland in the United States, Leiden in the Netherlands, and Birmingham the UK. FDF hosted the United States meeting and attended both European meetings.  […]

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Loyola Undergrad Studies FD/MAS Treatments

Foundation News Research News Treatment News

Early this fall, Deanna Portero, FDF’s Executive Director, and Amanda Konradi PhD, FDF President-Emeritus attended a Service Learning fair at Loyola University Maryland in Baltimore, MD, where Dr. Konradi is also a professor.  Community engagement is central to Loyola’s commitment to transformative student learning, and FDF is always looking to engage more energy in the […]

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3rd International FD/MAS Meeting in the Netherlands

Advocacy News Foundation News Patient Spotlight Treatment News

Patient and researcher meetings are important because they allow engaged members of a rare disease community to organize, strategize, and take action. This year, patient and family meetings were held in Maryland in the United States, Leiden in the Netherlands, and Birmingham in the UK. FDF hosted the United States meeting and attended both European meetings […]

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FDF Attends 2017 FDMAS Patient Meeting in Birmingham

Advocacy News Foundation News Patient Spotlight Treatment News

Patient and researcher meetings are important because they allow a rare disease community to learn, organize, strategize, and take action. This year, patient and family meetings were held in Maryland in the United States, Leiden in the Netherlands, and Birmingham in the UK. FDF hosted the United States meeting and attended both European meetings, including […]

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Possible Increased Risk of Breast Cancer in FD/MAS Patients

Foundation News Research News Treatment News

Researchers 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 Welcomes Dr. Daniel Handel to the Medical Advisory Council

Foundation News Treatment News

The Fibrous Dysplasia Foundation (FDF) is pleased to announce that Dr. Daniel Handel has accepted an invitation to join the FDF Medical Advisory Council. The Medical Advisory Council is a body of talented clinicians with substantial experience treating FD/MAS who contribute to FDF initiatives and advise the FDF on matters related to medical treatment. Dr. […]

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New Study Confirms ONJ as Potential Side Effect of Bisphosphonate Use

Foundation News Research News Treatment News

Osteonecrosis of the jaw (ONJ) is a known potential side effect of intravenous bisphosphonates such as pamidronate (Aredia), and zoledronic acid (Reclast). ONJ is a condition where the bone in the jaw weakens and dies, which usually causes pain. Although bisphosphonates are frequently prescribed for patients with fibrous dysplasia (FD), there were no published reports […]

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