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

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 […]

$160K FD/MAS Research Funding Available

We are delighted to share the Request for Applications for this year’s Team FD/MAS Million Dollar Bike Ride grants: Fibrous dysplasia/McCune-Albright syndrome (FD/MAS) is a rare multisystem disease caused by somatic mutations in GNAS. The mutation results in constitutive activation of the Gsα cAMP signaling pathway. Skeletal manifestations include bone pain, fractures, deformity, and […]

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 […]

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.