News

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

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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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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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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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THANK YOU to all who support TEAM FD/MAS

Research News

We are so grateful to the FD/MAS community, donors, and riders for the Annual Million Dollar Bike Ride sponsored by Penn Medicine Orphan Disease Center for supporting 2021 Team FD/MAS! These gifts and registration fees directly fund FD/MAS research grants and support FD/MAS Alliance’s mission to advocate for research for evidence-based treatments for those living […]

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How close are we to developing a drug to treat FD/MAS?

Research News

How close are we to finding a treatment for FD/MAS? An audience member posed this question in a recent update from 4 researchers funded by Team FD/MAS, and the answer? It depends.   Because of your generosity, the last few years have been a real breakthrough for FD/MAS. Team FD/MAS has been partnering with the […]

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The 2020 Team FD/MAS Awardee

FD/MAS Alliance and UPenn ODC Award the 2020 FD/MAS Research Grant

Foundation News Research News

We’re thrilled to share the news that the 2020 Team FD/MAS Million Dollar Bike Ride Research Grant has been awarded to Dr. Mara Riminucci for her project entitled: Osteoclasts and Pain in Fibrous Dysplasia: Investigating and targeting the molecular links in a transgenic mouse model (EF1α-GsαR201C mice) of human fibrous dysplasia Dr. Riminucci will receive […]

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FD/MAS Federal Research Funding Initiative

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The FD/MAS community of researchers and advocates continues forward with the Department of Defense Funding Opportunity One of the most significant initiatives that FD/MAS Alliance continues to advance is the Peer Reviewed Medical Research Program (PRMRP). The PRMRP is a major research opportunity that our team of advocates has unlocked for FD/MAS researchers through the […]

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Researchers and Advocates Move Forward with Department of Defense Funding

Advocacy News Foundation News Research News

One of the biggest initiatives that FDF is working on right now is the Peer Reviewed Medical Research Program (PRMRP). The PRMRP is a huge research opportunity that our team of advocates have unlocked for FD/MAS researchers through the US Department of Defense’s Congressionally Directed Medical Research Program (DOD CDMRP). Thanks to the tireless efforts […]

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Association MASFD Gives $60K Research Gift with Support from FDF

Foundation News Research News

Washington DC (September 2020) Fibrous Dysplasia Foundation’s collaboration with Association MASFD results in funding a study to understand the central nervous system manifestations of McCune-Albright Syndrome The Fibrous Dysplasia Foundation (FDF) is proud to highlight the Association MASFD’s $60,000 donation to a globally renowned University of Iowa neuroscientist, Dr. Ted Abel. Dr. Abel is the […]

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