FD/MAS Publications
Association of Hearing Loss and Otologic Outcomes With Fibrous Dysplasia. JAMA Otolaryngol Head Neck Surg. 2018
Comorbidity, Craniofacial care
This study examines FD lesions surrounding the ear and skull base. Though many patients fear the loss of hearing, research suggests watchful waiting rather than aggressive surgery.
Click to ReadBest practice management guidelines for fibrous dysplasia/McCune-Albright syndrome: a consensus statement from the FD/MAS international consortium. Orphanet Journal of Rare Diseases 2019
General
Treatment guidelines compiled by the International Consortium of FD/MAS researchers. These guidelines include a series of flowcharts that can help patients and caregivers decide on appropriate screening and treatment plans.
DOWNLOAD PDFBone-Grafting in Polyostotic Fibrous Dysplasia. J Bone Joint Surg Am. 2016
Axial and Appendicular Management
Research suggests that bone grafting is not an effective way to remove FD lesions since lesions tend to regrow and take over otherwise healthy bone grafts.
DOWNLOAD PDFResearch
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Optimizing your In-Person and Telehealth Visits
GeneralA discussion to empower you to make the most of your medical visits with fibrous dysplasia and McCune-Albright syndrome (FD/MAS) led by Medical Advisory Council Member Dr. Edward Hsiao of the University of California San Fransisco.
Click to watchFD/MAS and Research January 2023 Update
ResearchMany 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? Dr. Alison Boyce of the NIH, the Chair of our Medical Advisory Council will discuss FD/MAS and research to address […]
Click to watchRehabilitation for Daily Life Function for Persons with FD/MAS -Video
Axial and Appendicular Management GeneralPlease enjoy this full recording of our November 8th, 2022 web program: Rehabilitation for daily life function for persons with FD/MAS, presented by Dr. Scott Paul of the NIH and FD/MAS advocate Tiffany Meyer.
Click to watchCovid-19 and FD/MAS 2021 Update -Video
GeneralCOVID-19 and FD/MAS, an updated discussion hosted by FD/MAS Alliance with Drs. Alison Boyce, Michael Collins, Ed Hsiao, Robert Stanton, and Kelly Wentworth, March 2021.
Click to watchCovid-19 and FD/MAS 2020 -Video
GeneralCOVID-19 and FD/MAS, a 2020 discussion hosted by FD/MAS Alliance with Drs. Alison Boyce, Michael Collins, Edward Hsiao, and Robert Stanton, and with Spanish translation by Ms. Karen Pozo The video did experience some interruption in the first five minutes but is clean through the remainder.
Click to watch