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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Miss (and Ms.) Amazing

Patient Spotlight

Meet Ellasyn Berry of Little Chute, Wisconsin.  At 13 years old, she is a rollercoaster rider, a swimmer, a Bath & Body Works shopper, a future anesthesiologist, and living every day with McCune-Albright syndrome (MAS) and Polyostotic Fibrous Dysplasia (PFD).  Ellasyn is surrounded by family that she lovingly describes as “chaotic.” Mom (Leah) works for […]

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Mouse Models, Research, and Hope

Research News

We had the pleasure of interviewing Yingzi Yang, Ph.D., Associate Dean for Research and Professor of Developmental Biology at the Harvard School of Dental Medicine. Dr. Yang is a leading scientist/researcher in skeletal biology and genetic disease studies and the recipient of a Team FD/MAS Million Dollar Bike Ride award. Dr. Yang received her B.S. […]

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International Consortium for FD/MAS Launch Meeting

Research News

Researchers, clinicians, and advocates are invited to the International Consortium for FD/MAS Launch Meeting July 14th, 2022 at 13:00 – 16:00 GMT (9:00 – 12:00 EST) Please Register via this link. 

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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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Global collaboration launches the International Consortium for Fibrous Dysplasia and McCune-Albright Syndrome

Advocacy News Foundation News Research News

18 February 2022 Media Contact:  info@icfdmas.com FD/MAS Alliance, Patiëntenvereniging Fibreuze Dysplasie, ASOCIACIÓN DE DISPLASIA FIBROSA – ADF, Fibrous Dysplasia Support Society UK, and European Association for McCune-Albright Syndrome are announcing the launch of the International Consortium for Fibrous Dysplasia and McCune-Albright syndrome Ltd. (ICFDMAS).  Fibrous dysplasia and McCune-Albright syndrome (FD|MAS) is a rare disease that […]

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Meet the International Consortium for FD/MAS

Foundation News

February 20th at 11:00 EST on Facebook live (even if you don’t have Facebook) The international Consortium for FD/MAS (ICFDMAS) will officially launch on 20th of February, 2022. The group has met informally since 2015 as a group of researchers, clinicians, and patient advocates from around the world. Over the course of these meetings, a consensus was […]

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2021 Team FD/MAS Research Grants Announced

Foundation News Research News

FD/MAS Alliance is thrilled to share that three FD/MAS research grants have been awarded from the 2021 Million Dollar Bike Ride! Last spring, Team FD/MAS raised $161,373 for fibrous dysplasia, McCune-Albright syndrome (FD/MAS)-focused research through the UPenn Orphan Disease Center’s Million Dollar Bike Ride. After careful review of several applications by the FD/MAS Alliance’s Scientific […]

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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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2021 FD/MAS Research Funding Opportunity Announced

Research News

We’re thrilled to announce that research grants of up to $80,867 to study fibrous dysplasia or McCune-Albright syndrome are now available thanks to the work of Team FD/MAS in the UPenn Orphan Disease Center’s Million Dollar Bike Ride. The one-page letter of interest (LOI) is due Thursday, September 16th, 2021 by 8pm EST.  Please read […]

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