FD/MAS Global Awareness Week Media Kit

Build empathy, community, and treatment options:

Who we are & why we do it:

FDMAS Alliance is a community-driven 501c3 nonprofit that fosters the development of evidence-based treatments for Fibrous Dysplasia and McCune-Albright syndrome (FD/MAS). We advance research, provide education, and channel the voices of individuals and caregivers with FD/MAS.

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 2024 we celebrate the fifth annual FD/MAS Global Awareness Week.

Build Empathy, community, and treatment options:
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FD/MAS patients often see clinicians who are entirely unaware of the disease or operate on outdated treatment assumptions.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.

FD/MAS is a complicated and rare disease. Those diagnosed with the disease and their caregivers often feel overwhelmed and alone. The FD/MAS community needs an improved understanding of their disease, and further research and quality-of-life advancements are urgent.

Ready, set, share:

If you’re ready to become an FD/MAS advocate, you can start by sharing your experience and talking about FD/MAS to your community. Here are some images and caption ideas ready for you to use:

 

Did you know that [I/my loved one] has FD/MAS? This week is #FDMASGlobalAwarenessWeek so I want to explain this diagnosis and what it means to me. #fibrousdysplasia #McCuneAlbrightsyndrome #FDMAS

 

 

 

 

 

FD/MAS is rare, so many doctors haven’t seen anyone with this diagnosis. Even if they HAVE seen someone with FD/MAS, the genetic mutation can appear in any combination of bones, the skin, and hormonal function, so one case may look totally different from another. [I am affected in my femur/hip/jaw bone/etc]. #fibrousdysplasia #McCuneAlbrightsyndrome #FDMAS

 

 

 

 

FD/MAS is rare and completely random. You can’t inherit it from a parent or pass it on to a child. It’s just an unlucky genetic mutation and it happens to people all over the world. [I’ve never met anyone else in person who has this disease OR I’ve met other people with FD/MAS from around the world, and we are all –as a rule–awesome! ;-)] #fibrousdysplasia #McCuneAlbrightsyndrome #FDMAS

 

 

 

 

It can be scary and overwhelming to have a rare disease like FD/MAS. Educating people about this disease can help people access the care they need. [I/my loved one was diagnosed at the age of ## and finding information about FD/MAS made us feel hope.] #fibrousdysplasia #McCuneAlbrightsyndrome #FDMAS

 

 

 

There isn’t any cure for FD/MAS, and the treatment options available aren’t great, but the FD/MAS community is determined to find better options and answers to the medical questions that keep us up at night. Team FD/MAS has spent 10 years funding FD/MAS research and supported 20+ research projects all focused on FD/MAS! #fibrousdysplasia #McCuneAlbrightsyndrome #FDMAS #TeamFDMAS

 

 

 

 

If you have questions about FD/MAS Global Awareness Week, please reach out to Tovah Burstein, Community Engagement Director via tburstein@fibrousdysplasia.org