Meet the Patient Advisory Council

FD/MAS Alliance Launches a Patient Advisory Council

In July 2022 FD/MAS Alliance launched our inaugural Patient Advisory Council, a group of community advisors and organizational ambassadors for the FD/MAS Alliance.

Without the trust, respect, support, and engagement of the FD/MAS community, our work cannot be successful. The community members who stepped forward to form this first class of ambassadors represent some of the most dedicated, dynamic, and inspiring people we have had the pleasure to work alongside and we’re thrilled to introduce them to you now:

Meet the Patient Advisory Council
Join Our

Community

Often people reach out to the FD/MAS Alliance because they feel isolated and overwhelmed with the challenges, decisions, and emotions that come with their Fibrous Dysplasia/McCune-Albright Syndrome diagnosis. As a community, we go farther faster as we support each other in the journey. You are not alone.

FD/MAS Alliance relies on people just like you to fulfill our mission. Everyone can contribute something, and when enough people do, that’s when we are able to make a difference.

Events

Optimizing your In-Person and Telehealth Visits

Join Dr. Edward Hsiao of UCSF for some tips and guidance on how to get the most out of your FD/MAS medical visits, both in-person and virtually.This is a great opportunity to ask FD/MAS related care questions and feel empowered entering your upcoming appointments. Streamed live via our Facebook page. Registration will open soon. Watch our website for more detail!

Rehabilitation for Daily Life Function for Persons with FD/MAS

Join Dr. Scott Paul of the NIH and FD/MAS advocate Tiffany Meyer for a discussion of rehabilitation medicine and FD/MAS. The program will be streamed live to our Facebook page. This event has been postponed due to an unexpected hospital admission for our community advocate. Stay tuned for more info.

FDMAS Patient Registry

Happy Birthday to the FD/MAS Patient Registry

Patients and caregivers can enroll in this IRB-approved study. FD/MAS Patient Registry has 900+ participants who have enrolled. The Registry allows them to fill out surveys and share medical data in a secure repository. Information on this ongoing research project launched by the FDF can be found at www.fdmasregistry.org

Partners