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 Art Competition

FDMAS Awareness Week

February 20th-27th is FD/MAS Global Awareness Week. FD/MAS Global Awareness Week is a coordinated international campaign to raise awareness of fibrous dysplasia and McCune-Albright syndrome (FD/MAS) and build support for public health and research that will improve the lives of FD/MAS patients. In 2023 we celebrate the fourth annual FD/MAS Global Awareness Week with the them #myFDMASlife […]

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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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Welcoming Audrey Thurm to the Medical Advisory Council

Foundation News

We are delighted to announce the addition of Audrey Thurm, Ph.D., to our Medical Advisory Council. Dr. Thurm is a psychologist at the NIH and has worked closely with Medical Advisory Chair Dr. Alison Boyce to provide support to the families enrolled in the FD/MAS Natural History study that Dr. Boyce oversees at the NIH. […]

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Our In-Person Conference 2023 – Help Pick Our Theme

Foundation News

FD/MAS Alliance is planning our long-awaited, in-person conference to be held September 8-11th, 2023. We will be meeting in the DC area and are in the early stages of planning this event. You can help us plan! Fill in this 1-question, 1-minute poll before December 15, and help pick the theme of the conference! Loading…

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With your help, we did it! Giving Tuesday 2022

Foundation News

Many thanks to everyone who participated in Giving Tuesday 2022. As you know, our goal on Giving Tuesday was to raise $25,000, and with your help, we did it! Contributions to the Giving Tuesday campaign – Hope is on the Horizon – enable us to advance research, provide education, promote the development of evidence-based treatments, […]

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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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FD/MAS Alliance’s Fiscal Year 2022 Impact Report

Foundation News

The FY 2022 Annual Report outlines all the accomplishments that you and our community have made possible in the last year.  These pages are filled with hope and with the faces of those who know that, because of the generosity of our donors, they are not alone, and better evidence-based treatments are possible. Your generosity […]

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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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