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 and 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 help them understand your diagnosis and care management better
- 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 print out of Treatment Guidelines from the FD Foundation’s 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
Questions and Comments
If you have questions or comments, please reach out to firstname.lastname@example.org