Patients

MALAJISA HARRIS

Patient Spotlight

Malajisa is an FD/MAS warrior. After four major surgeries on her hip and femurs, she remains a spot of sunlight and optimism for those around her. She insisted on going back to school two days after surgery.

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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.

Register

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