site logo
Click to toggle navigation menu.

We envision a future where everyone with FD/MAS can THRIVE

FD/MAS Global Awareness Week

Your support makes the difference!

FD/MAS Alliance was formed by a group of patients and caregivers who believed that those living with fibrous dysplasia, McCune-Albright syndrome (FD/MAS) needed and deserved better. Over the last 20 years, we’ve built a research network, a caring community, and a better understanding of this rare bone and endocrine disease. We are so proud of our accomplishments-and it wouldn’t be possible without you!

Our mission remains clear:

  • Advanced evidence-based research
  • Educate clinicians, families, and the broader population
  • Amplifying the voices of those living with FD/MAS

Want to get more involved?

  • Host an FD/MAS Research Priorities Workshop, which will clarify our community research strategy.
  • Upgrade our Patient Registry — an IRB-approved study that empowers patients to engage in research.
  • Continue vital community support opportunities, connecting patients, caregivers, researchers, and clinicians.

We see a path ahead, and if you want to see these advances continue, we hope you will consider supporting our work.

Your gift can determine how ambitious we can be as we aim for the next milestone in advancing the priorities of the FD/MAS community. Thank you!

Give To Support a STRONG FD/MAS Alliance
media pay button

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and limited awareness, FD/MAS patients often see clinicians who are entirely unaware of the disease or operate on outdated treatment assumptions.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

News

Fall 2026 FD/MAS Research Update

Join the Alliance for a Research Update Featuring a Study on Pain in FD/MAS The FD/MAS Alliance is hosting a virtual research update on Tuesday, October 6, 2026 from 1-2 PM EDT with featured speaker Dr. Jaymin Upadhyay of Boston Children’s Hospital. The session will include a review of Dr. Upadhyay’s pilot study supported by […]

Inspiring Artwork Needed to Represent the FD/MAS Journey

The FD/MAS Alliance is seeking original artwork that reflects the real-life experiences, resilience, and strength of individuals living with fibrous dysplasia and McCune-Albright syndrome. As a patient-centered organization, we are committed to spotlighting the voices and journeys of our community members. Following the success of our 2025 Annual Report, the selected art will be featured […]

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.

Faces of FD/MAS video library Donate

Events

Community Meet Up - Open Office Hours

Meet the FD/MAS Alliance Team! Join us for some informal conversation with our new Program Coordinator, Lori Butterfield. Let’s share ideas about the the FD/MAS Alliance and how we can support our community.

FD/MAS Alliance Fall 2026 Research Update

Join FD/MAS Alliance for a virtual research update on Tuesday, October 6, 2026 from 1-2 PM EST with featured speaker Dr. Jaymin Upadhyay of Boston Children's Hospital. The session will include a review of Dr. Upadhyay's pilot study on drivers of pain in fibrous dysplasia and McCune-Albright syndrome as well as a Q&A session with attendees.

Community Meet Up - Research Update Follow Up/ Pain in FD/MAS

Camryn Berry, patient advocate, PhD student, and member of Dr. Jamin Upadhyay's team will provide a brief overview of the recently published study on pain in FD/MAS and lead our discussion on research.

*****