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!
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and limited awareness, FD/MAS patients often see clinicians who are entirely unaware of the disease or operate on outdated treatment assumptions.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/MASWe are delighted to share the Request for Applications (RFA) for the 2023 Team FD/MAS MDBR Grants Fibrous dysplasia/McCune-Albright syndrome (FD/MAS) is a rare multisystem disease caused by somatic mutations in GNAS. The mutation results in constitutive activation of the Gsα cAMP signaling pathway. Skeletal manifestations include bone pain, fractures, deformity, and osteomalacia/rickets. Four grants […]
A total of $161,620 for fibrous Dysplasia/McCune-Albright syndrome (FD/MAS) research was raised and will fund up to 4 grants. TEAM FD/MAS was also the #1 fundraising team at the MDBR event sponsored by UPenn Orphan Disease Center. This achievement would not have been possible without you and the incredible support of the FD/MAS community. We […]
How do you explain a disease that is so complex, varying, and rare? Through stories. Through narrative context. By giving the experience a face. About: Faces of FD/MAS is an FD/MAS Alliance video project envisioned and guided by the Patient Advisory Council (PAC). The project aims to capture the diverse experiences of those in the […]
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.
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!
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.
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).
