Meet the PAC
Introducing the 2024 Patient Advisory Council

Meet the new members of the Patient Advisory Council (PAC)

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 inspiring. Without the trust, respect, support, and engagement of the FD/MAS community, our work cannot be successful.

Meet the 2024 PAC

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and limited awareness, FD/MAS patients often see clinicians who are entirely unaware of the disease or operate on outdated treatment assumptions.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
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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.


PRMRP Information Session

FD/MAS was again named one of the disease topic areas eligible for dedicated Department of Defense (DOD) research funding through the Peer Reviewed Medical Research Program (PRMRP). Researchers have already been successful securing significant funding from this program and it is our goal to see that more FD/MAS research moves forward with DoD funds. To that end, we have scheduled a webinar for all interested researchers to meet with PRMRP program staff:

FD/MAS Community Social for Caregivers

Join us for a community social specifically focused on connecting FD/MAS caregivers hosted by Board Treasurer Chris Guest and FD/MAS Advocate Gina Mumper.

Team FD/MAS and the Million Dollar Bike Ride

Join Team FD/MAS as we raise funds to support FD/MAS research. This is our 10th 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!