Faces of FD/MAS: William's Story
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- čas přidán 18. 06. 2024
- William's Story
Faces of FD/MAS is an FD/MAS Alliance video project envisioned and guided by the Patient Advisory Council (PAC). The project aims to capture the diverse experiences of those in the fibrous dysplasia, McCune-Albright syndrome (FD/MAS) community.
FD/MAS is a complicated, varied, and rare disease. Those diagnosed with the disease and their caregivers often feel overwhelmed and alone. Those situated to help through research, advocacy, and investment are often unaware or confused by the disease.
Faces of FD/MAS hopes to give solace and solidarity to those in the FD/MAS community by demonstrating that they are not alone and that those with FD/MAS can lead full, vibrant, and successful lives. The project simultaneously aims to illustrate the great need for improved understanding and treatment outcomes and the urgency for research and quality-of-life advancements.