News

Meet the 2024 Patient Advisory Council

Advocacy News Foundation News Patient Spotlight Uncategorized

We’re so proud to introduce our 2024 Patient Advisory Council, a group of community advisors and organizational ambassadors for the FD/MAS Alliance. In the last two years, the Patient Advisory Council has hosted numerous community socials and learning opportunities and spearheaded the incredible #FacesofFDMAS video initiative. Their guidance behind the scenes has been steady and […]

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2023: BIG Impact, BIG gratitude, BIG plans!

Advocacy News

Happy holidays! Thank you for being an important part of the FD/MAS Alliance in 2023. From the FD/MAS Community Conference to federal funding announcements, and being highlighted at the NIH, it has been a terrific year and you are a key part of our strong community. Together, in 2024 we will accomplish even more. On […]

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Becoming an Advocate for ELSA -Ensuring Lasting Smiles Act

Advocacy News Uncategorized

Hi, my name is Brittany Anderson. I had a tooth removed in 1997, when I was 13 years old, and the swelling never went down from the extraction. They then did a biopsy on the bone and I was diagnosed with a bone disease called fibrous dysplasia (FD). FD is a rare genetic disease that […]

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Vote for FD/MAS Community artists in RARE Artists Competition!

Advocacy News Patient Spotlight

We’re thrilled to share that not one, but TWO FD/MAS community members have been named finalists in Every Life Foundation‘s RARE Artist competition. We’re so inspired by Katie Corvelle and Christina Schulz for both their creative talent and their advocacy. Now, they need our help as the winners are selected through community vote! We encourage […]

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Disability Benefits 101 and 102

Advocacy News Foundation News

We’re pleased to share the recording of this 2 part workshop designed to help individuals with disabilities reach a greater understanding of some of the different government benefits available.  These benefits are discussed in detail in clear, concise language, including how to qualify for, and the differences between, Supplemental Security Income (SSI), Medicaid, Social Security […]

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Meet the PAC!

Advocacy News Foundation News Patient Spotlight

In July 2022, FD/MAS Alliance launched our inaugural Patient Advisory Council, a group of community advisors and organizational ambassadors for the FD/MAS Alliance.  Without the trust, respect, support, and engagement of the FD/MAS community, our work cannot be successful.  The community members who stepped forward to form this first class of ambassadors represent some of […]

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International FD/MAS Patient Groups Release Top Priorities for FD/MAS research

Advocacy News

FOR IMMEDIATE RELEASE Washington, DC (July 14th, 2022)   To the researchers and clinicians of the International Consortium for FD/MAS: Patient groups from around the globe including FD/MAS Alliance, Patiëntenvereniging Fibreuze Dysplasie, ASOCIACIÓN DE DISPLASIA FIBROSA – ADF, Fibrous Dysplasia Support Society UK, EAMAS, FD/MAS Brasil, and GULI (FD/MAS) Care Center have collectively identified nine […]

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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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Lauren Foster Headshot

A Message from Lauren Foster, Patient Advocate

Advocacy News Constant Contact Foundation News

I stand by Team FD/MAS and here’s why: WE matter. Our health matters. Some people don’t realize that if we donate the price of a meal at McDonald’s, we help find a cure. As an FD/MAS patient, I’ve struggled with this disease every single day of my life, as I know so many of you […]

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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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