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:

media pay button

For Patients

For Researchers/ Clinicians

Latest

News

Vote for FD/MAS Community artists in RARE Artists Competition!

We’re thrilled to share that not one, but TWO FD/MAS community members have been named finalists in Every Life Foundation‘s RARE Artist competition. We’re so inspired by Katie Corvelle and Christina Schulz for both their creative talent and their advocacy. Now, they need our help as the winners are selected through community vote! We encourage […]

Drs. Alison Boyce (left) and Luis Fernandez de Casto (right)

Fibrous Dysplasia Research Gains More Scientific Attention at Bone Mineral Research Meeting

This September, FD/MAS Alliance sent Executive Director Adrienne McBride, to attend the American Society of Bone and Mineral Research (ASBMR) meeting, which Dr. Michael Collins called “a real triumph for the fibrous dysplasia/McCune-Albright syndrome (FD/MAS) research community.” Drs. Michael Collins, Acting Chair of the FD/MAS Alliance Scientific Advisory Council (SAC), and Alison Boyce, Chair of […]

Take the Lead: Optimizing Palliative Care

While not every person with FD/MAS has pain, many in the FD/MAS community do experience significant pain, and their concerns are not always taken seriously. Because of the varied responses that patients receive to their concerns, it’s important to understand the resources available for addressing FD/MAS-related pain. To explore this topic, we spoke to FD/MAS […]

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

Spooky Social - Community Meet and Greet

All ages are welcome (caregivers and family members included!) to this informal Zoom social event. There will be games, prizes for costumes, and conversation.

October 30th, 2022

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

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. Now rescheduled for November 8th at 12:00 pm EST.