FD/MAS Global Awareness Week
February 20th-27th, 2023

Join us for a week of awareness and celebration

FD/MAS Global 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.

#myFDMASlife

In 2023, our theme is #myFDMASlife. Our community is full of a wide range of experiences, interests, talents, and passions. We want recognize the challenges that come with a diagnosis of FD/MAS while also celebrating the many ways people in the FD/MAS community live life to the fullest. Follow us on Facebook and Instagram to see FD/MAS factoids and meet FD/MAS community members sharing their version of #myFDMASlife.

There are several ways you can participate in #myFDMASlife, but we’re most excited to introduce the first-ever FD/MAS Global Awareness Art Competition for visual and literary art! We hope you’ll share your experience and your talent by submitting a piece.

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Fibrous dysplasia, McCune-Albright syndrome

Fibrous Dysplasia (FD) and McCune-Albright syndrome (MAS) are rare, chronic diseases caused by a random, uninherited gene mutation on the 20th chromosome. FD presents as soft, malformed bones susceptible to fracture, chronic bone pain, and deformity. MAS is the combination of FD and abnormal hormone levels and/or rough-bordered birthmarks.

FD/MAS can surface in a sudden incident--an infant experiencing the onset of puberty or a toddler who unexpectedly breaks their femur during an otherwise routine activity. It could also be a gradual discovery, like observing a lump in the skull or a limp. Disease presentation can vary significantly from patient to patient; no two cases of FD/MAS are alike.

Due to the low prevalence and limited awareness, FD/MAS patients often see clinicians who are entirely unaware of the disease or operate on outdated treatment assumptions. Patients’ concerns may be dismissed or incorrectly diagnosed for years before a clinician with specialized expertise assesses the patient. People with FD/MAS can live full, happy lives, however, there is, as of yet, no FDA-approved treatment and no cure for the disease.

Fast Facts about FD/MAS

For Patients

For Researchers/ Clinicians

Latest

News

FD/MAS Research Grants Announced

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 […]

FD/MAS Global Awareness Art Competition

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 […]

FD/MAS Global Awareness Week Social -Hosted by the PAC

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 […]

Join Our

Community

Often people reach out to the FD/MAS Alliance because they feel isolated and overwhelmed with the challenges, decisions, and emotions that come with their Fibrous Dysplasia/McCune-Albright Syndrome diagnosis. As a community, we go farther faster as we support each other in the journey. You are not alone.

FD/MAS Alliance relies on people just like you to fulfill our mission. Everyone can contribute something, and when enough people do, that’s when we are able to make a difference.

Events

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 2022 we celebrate the third annual FD/MAS Global Awareness Week.

FD/MAS Global Awareness Week Community Social

Team FD/MAS and the 10th Million Dollar Bike Ride

Join Team FD/MAS as we raise funds to support FD/MAS research. This is our 9th year participating in the event and we've already raised over $1 million dollars for FD/MAS specific research. We won't stop until we have a treatment or cure!