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
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:
- Updating the Library of Published Research
- Sharing news about research and treatment in the FD/MAS Alliance Newsletter
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:
- Printing extra copies of these Toolkit Resources so you can keep them up to date
- Visit www.fdmasregistry.org and update any surveys in your “updateable surveys” tab. Print survey updates and include those updates in your survey sleeves
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 firstname.lastname@example.org