News

FD/MAS Research Grants Announced

Research News

FD/MAS Alliance is thrilled to share that two FD/MAS research grants have been awarded from the 2022 Million Dollar Bike Ride!  Last spring, Team FD/MAS raised $160,000 for 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 Advisory Council and the […]

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FD/MAS Global Awareness Week Social -Hosted by the PAC

FDMAS Awareness Week Research News

  Join us Sunday, February 26th, from 2:00 – 3:30 pm EST (7:00-8:30 pm GMT) for an informal community social. We’ll start by watching a short TED Talk before we open it up to general conversation about our experiences with fibrous dysplasia, McCune-Albright syndrome (FD/MAS and life in general. It can be a powerful experience […]

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FD/MAS and Research Webinar -Postponed and Rescheduled

Research News

Please note: the FD/MAS and Research webinar has been postponed and rescheduled for January 13th, 2023 at 3:00 pm EST. Many 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? […]

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$160K FD/MAS Research Funding Available

Foundation News Research News

We are delighted to share the Request for Applications for this year’s Team FD/MAS Million Dollar Bike Ride grants:   Fibrous dysplasia/McCune-Albright syndrome (FD/MAS) is a rare multisystem disease caused by somatic mutations in GNAS. The mutation results in constitutive activation of the Gsα cAMP signaling pathway. Skeletal manifestations include bone pain, fractures, deformity, and […]

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Watch the Launch Meeting for International Consortium for FD/MAS

Foundation News Research News

On July 14th 2022, the International Consortium for FD/MAS (ICFDMAS) held a launch meeting open to all researchers, clinicians, and advocates. The meeting agenda included an introduction to the ICFDMAS, a presentation from the collaborating patient groups from around the globe, and updates on clinical and basic research in the field of FD/MAS. The meeting […]

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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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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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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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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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