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

Latest

News

Optimizing Your In-Person and Telehealth Visits

Have you ever gone to a long-awaited medical appointment only to realize the provider isn’t familiar with fibrous dysplasia, McCune-Albright syndrome (FD/MAS)? Do you feel overwhelmed with health challenges, unsure which issue to address first, or how to tease one complaint out from the ways it affects the rest of your daily life and medical […]

Disability Benefits 101 and 102

We’re pleased to share the recording of this 2 part 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 […]

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 […]

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 Drs. Kelly Wentworth and 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.

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