You’re Invited to Registry Week!

October 27th to November 5th


Registry Week is our way of celebrating year 2 of the FD/MAS Patient Registry, the largest cohort of FD/MAS patients worldwide.

The Registry can be an invaluable resource for patients and researchers who are interested in advancing treatment options for FD/MAS. But the tool is only as strong as the data you share.


How can I participate in Registry Week?


Help us celebrate by visiting the Registry and completing a survey! The Registry data is most useful when participants provide a full picture of their medical history and experiences.

  • Go to “Initial Surveys” --make sure you’ve taken all surveys! (pst: we’ve added another!)
  • Go to “Surveys to Retake”--Take both surveys here!
  • Go to “Updatable” --make sure you note any new fractures, surgeries, or other changes that may have occurred in the last two years

Why the surveys are important

Each survey you complete gives us a clearer picture of FD/MAS and provides more data for scientists to analyze and understand this disease better.

When you complete ALL your surveys, researchers can look at the full picture. The more patients that complete their surveys, the more valuable the data becomes, and the more likely scientists will be able to find new answers to patients’ most pressing questions.


There’s a take home gift!

If advancing science isn’t enough for you, we’ve got a gift! Any Registry participant that completes all their surveys and is in good standing with the FD/MAS Patient Registry will receive an FD/MAS Toolkit. Learn more about this resource.


Registry Week Online and in the Community

Between October 27th and November 5th, 2018 we’ll be celebrating Registry Week and we hope you will too. Be on the lookout for new content on our Facebook page and Twitter.

Welcome to the FD/MAS Patient Registry

FD/MAS Patient Registry is Open for Enrollment

It’s hard for families, doctors and researchers to find answers to basic questions about how to treat fibrous dysplasia/McCune-Albright syndrome (FD/MAS), because FD/MAS is so rare and because there is not enough patient data for researchers to analyze. The FD/MAS Patient Registry is a research project that allows patients and families to share their experiences with FD/MAS by completing a series of surveys.

If enough people in the FD/MAS community tell their story through the FD/MAS Patient Registry, then as a community, we could get more answers about FD/MAS symptoms, treatments, and outcomes. We could find out which problems are uncommon, and which obstacles are likely. We could learn which paths work, and which paths are dead ends.

If you are a person living with FD/MAS, or are the legal guardian of a person living with FD/MAS, you can enroll is this study. For more information about the study or how to enroll, please visit the About page for patients

This news section will be updated from time to time with updates about the research project, including news about findings from the study.