Patients

Patient Spotlight

Mara broke her femur, and less than a year later, challenged herself to walk 8 miles on the Camino de Santiago. She dedicated her walk to Team FD/MAS and FD/MAS research. Mara's honesty, determination, and positivity make her story an incredible read.

Participate

Participate In Research

Enrolling in a study is a personal decision that may have risks or benefits. The FD/MAS Alliance provides this page as a resource for patients and families.

Patient Registry

The FD/MAS Patient Registry is a research project that allows patients and families to share their experiences with fibrous dysplasia/McCune-Albright syndrome (FD/MAS) by completing a series of surveys.

Guide

Treatment Guide

A Clinical Pathway for FD/MAS Care

This updated version combines the research and checklist formats in to one document: This links to the Clinical Pathway in full.

FD/MAS

Toolkit

The FD/MAS Toolkit is a resource to empower patients and caregivers and help them navigate the best care possible.

Inside the Toolkit you’ll find:

Patient Profile Documents

Research
Articles

Notes and
Follow Up tools

Registry Survey Sleeves