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:

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For Patients

For Researchers/ Clinicians

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News

Disability Benefits 101 – Recording

We’re pleased to share the recording of this workshop designed to help individuals with disabilities reach a greater understanding of some of the different government benefits available. These benefits are discussed in detail in clear, concise language, including how to qualify for, and the differences between, Supplemental Security Income (SSI), Medicaid, Social Security Disability Income […]

Watch the Launch Meeting for International Consortium for FD/MAS

On July 14th 2022, the International Consortium for FD/MAS (ICFDMAS) held a launch meeting open to all researchers, clinicians, and advocates. The meeting agenda included an introduction to the ICFDMAS, a presentation from the collaborating patient groups from around the globe, and updates on clinical and basic research in the field of FD/MAS. The meeting […]

Meet the PAC!

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 […]

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

Disability Benefits 101

FD/MAS Alliance is a recipient of the Financial Advocacy in RARE Impact Grant sponsored by Global Genes. Thanks to this award, Disability Benefits 101 is made possible. This is the first in a two part conversation designed to help individuals with disabilities reach a greater understanding of some of the different government benefits available.

Disability Benefits 101-Follow Up Conversation

FD/MAS Alliance is a recipient of the Financial Advocacy in RARE Impact Grant sponsored by Global Genes. Thanks to this award, Disability Benefits 101 is made possible. This is the second in a two part conversation designed to help individuals with disabilities reach a greater understanding of some of the different government benefits available. Attendance in the first session is encouraged, but not required.

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 on August 19th at 12:00 EDT. Register to submit your questions ahead of time.