News

Research Article Emphasizes the Importance of Screening for Patients with FD/MAS for Pain

Foundation News Research News Treatment News

Pain 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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FD/MAS and QOL

Study Examines FD/MAS and Quality of Life (QOL)

Treatment News

Quality 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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bone pain webinar

Bone Pain and Fibrous Dysplasia, McCune-Albright syndrome (FD/MAS)

Treatment News

In July 2021 FD/MAS Alliance launched a monthly webinar series, live-streamed and available for free. Topics will range from medical education to more specific research updates, and will also include social topics of particular interest to the community. We are especially grateful to IONIS, Ultragenyx, and our Charlie’s Angels giving circle for supporting this series. These […]

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A Better Method for Detecting the Risk of Vision Loss in Craniofacial FD

Foundation News Research News Treatment News

Optic 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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An FD/MAS Community Webinar Series

Foundation News Treatment News

FD/MAS Alliance launched an ongoing monthly webinar series, live-streamed and available for free. Topics range from medical education to more specific research updates and include social topics of particular interest to the community.  We are incredibly grateful to IONIS, Ultragenyx, and our Charlie’s Angels monthly giving circle for supporting this series. We thank all those […]

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COVID-19 and FD/MAS an Updated Conversation

Treatment News

On March 12th FD/MAS Alliance hosted a COVID-19 and FD/MAS update from experts at the NIH and UCSF. Here are some major takeaways: Continue to look at guidelines from trusted sources such as the CDC for guidelines on travel, social distancing, and mask wearing All approved vaccines are safe for the FD/MAS community to take […]

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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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