News

Spotlight on Michael Collins, MD

Clinician Spotlight Uncategorized

Dr. Michael Collins is not just a champion of hope, he is a champion of action.  As a globally renowned expert in the clinical care and treatment of fibrous dysplasia and McCune-Albright syndrome (FD/MAS), Dr. Collins has been a driving force for the FD/MAS patient community and for the Fibrous Dysplasia Foundation (FDF) since the […]

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

Foundation News Research News Uncategorized

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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Researchers and Advocates Move Forward with Department of Defense Funding

Advocacy News Foundation News Research News Uncategorized

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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An FD Warrior’s experience at Rare Disease Week!

Advocacy News Foundation News Uncategorized

Every year, during the week of Rare Disease Day, FD/MAS advocates and rare disease advocates from other communities gather on Capitol Hill in Washington. These advocates use this time to encourage lawmakers to support legislation that helps the rare disease community including advocating for NIH research funding. This year, FD Warrior Brittany Anderson was among […]

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Support the Million Dollar Bike Ride

Uncategorized

All donations via check to Team FD for the Million Dollar Bike Ride should be made payable to the Fibrous Dysplasia Foundation, with the gift memo “UPenn Million Dollar Bike Ride 2020”. Mailed gifts will only be marked anonymous, or attributed to specific fundraiser, if the check is accompanied with a note to that effect. […]

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Imagine a World without FD|MAS

Advocacy News Foundation News Uncategorized

February 20th 2020 marks the beginning of the very first FD|MAS Global Awareness Week. We’re celebrating by asking patients, caregivers, and advocates to share their vision for a world without FD|MAS. What would your life look like if this horrible disease were cured? Would you… Have perfect attendance at school? Be a college football star? […]

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Fibrous Dysplasia Included in the Department of Defense Appropriations Bill

Advocacy News Foundation News Research News Uncategorized

Washington DC (December 20, 2019)  Fibrous Dysplasia Included in the Department of Defense Peer-Reviewed Medical Research Program We are grateful for the support of the Chairs and Ranking Members of the Appropriations Committee and the Defense Appropriations Subcommittee,  the individual members on the Subcommittee and the Senators, as well as their staff. Thanks to their […]

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