Celebrating the 2023 FD/MAS Community Conference
What an incredible weekend of research, advocacy, and collaboration!

Enjoy this slideshow from our time together!

We had SUCH a wonderful weekend at the FD/MAS Community Conference and left with full hearts and a head full of ideas about where we can go from here.

Together, we were:

26 People diagnosed with FD/MAS
27 Caregivers and family members
40 Researchers and clinicians
plus other advocates meant:
100 people all together!

2023 Conference Recap

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and limited awareness, FD/MAS patients often see clinicians who are entirely unaware of the disease or operate on outdated treatment assumptions.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


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.


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!

Poster Exhibit Abstracts Due

The 2023 Fibrous Dysplasia/McCune Albright Syndrome (FDMAS) Alliance Research Poster Exhibit will be displayed in person throughout the 2023 FD/MAS Alliance Community Conference in Silver Spring, MD, September 8 -10. The poster exhibition will showcase researcher and advocate work to attendees, including clinicians, researchers, patients, families, and sponsors. All those involved in FD/MAS research and advocacy are invited to submit an abstract. Students and early career investigators have an additional opportunity to win travel funding by competing in the poster competition.

FD/MAS Community Conference: Facing the Future - Together

We proudly invite you to the FD/MAS Community Conference: a weekend of education, connection, and collaborative research. The objective of this Conference is to combine patient-centered science and real-world strategies for patients and families living with fibrous dysplasia, McCune-Albright syndrome (FD/MAS).