News

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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The ABCs of FD/MAS

Patient Spotlight

One parent’s tips on how to talk to adults about your child’s FD/MAS diagnosis* The first time I took my daughter to her best friends’ house for a playdate I gave her a kiss and told her to be careful and follow the rules, because she already knew her limitations and how to keep herself […]

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FD/MAS Federal Research Funding Initiative

Advocacy News Research News

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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Find Your Strength

FDMAS Awareness Week Patient Spotlight

Hello, I’m Sarah and I’m from Sacramento, California.I was diagnosed with McCune-Albright syndrome when I was about three years old. My mom was putting me down for bed and stroked my face when she noticed a strange lump on my jaw. From there, it took several doctors visits until I could get a CT to […]

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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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An FD Warrior’s experience at Rare Disease Week!

Advocacy News Foundation News

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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2020 for our 20th Chromosome

Advocacy News Foundation News

The First-Ever FDMAS Global Awareness Week! FDF participated in the first-ever FD/MAS Global Awareness Week, February 20-28th, 2020. February 20th was chosen as the launch of this week of awareness and advocacy because both FD and MAS as well as related diseases such as Mazabraud syndrome all originate from a mutation on the 20th chromosome. […]

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Imagine a World without FD|MAS

FDMAS Awareness Week

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

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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Join Us for the Inaugural FD|MAS Global Awareness Week: February 20-27

Advocacy News Foundation News

Fibrous Dysplasia Foundation, Patiëntenvereniging Fibreuze Dysplasie, ASOCIACIÓN DE DISPLASIA FIBROSA – ADF, Fibrous Dysplasia Support Society UK, Eamas, and MASFD of France are announcing the first annual FD/MAS Global Awareness Week, between the 20th and 27th of February, 2020. FD/MAS Global Awareness Week is a coordinated international campaign to raise awareness of fibrous dysplasia and […]

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