FD/MAS Toolkit

The FD/MAS Toolkit is a resource to empower patients and caregivers and help them navigate the best care possible. Between tracking medication dosages, fractures and surgeries, insurance plans, and more, fibrous dysplasia/McCune-Albright syndrome (FD/MAS) can be a time-consuming disease. That’s why we’ve created this binder, a tool to help you plan and stay organized and up to date.

Inside the Toolkit, you’ll find:

Patient Profile Documents

Tools that you can share easily at any medical appointment to explain your background, your diagnosis, and the medications you take

Research Articles

Read these studies for your own knowledge, or share them with your providers to better understand your diagnosis and care management.

Notes and Follow Up tools

These documents will help you organize your thoughts and your time to make sure you get the most out of every medical appointment.

Registry Survey Sleeves

The physical toolkit will include sleeves for Registry participants to print and store their Registry surveys. Save time in Doctor’s visits by handing over a print out of your “Skeletal Surgeries” survey or other Registry questionnaires.

“So for the first time ever (I don’t know why I waited) I went to my family doctor with a printout of Treatment Guidelines from the FD/MAS Alliance website. He looked over all of them and did a whole “didn’t realize that the endocrine system was affected, but makes sense,” and ordered completely new tests, including a new CT of my skull, and a full-body scan that I haven’t had done since 1992!” –Lee Ann, FD/MAS Patient

Keep Your Toolkit Up To Date

Your FD/MAS Toolkit will be most useful if you keep it up to date. We’ll help you keep this resource up to date by:

Many of the resources in this binder are personalized tools for your FD/MAS treatment plan. You can keep those resources up to date by:

Alternatively, you can access the complete PDF of the FD/MAS Toolkit here.

We recommend updating your Registry surveys every two years and updating your binder at least once a year. That way, you’ll be prepared with a meaningful resource for yourself and your clinicians when you go to any medical appointment or hospital visit.

Questions and Comments

If you have questions or comments, please reach out to info@fibrousdysplasia.org