How do you explain a disease that is so complex, varying, and rare? Through stories. Through narrative context. By giving the experience a face.
About Faces of FD/MAS
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.
Filming will take place in person on September 8th, 2023, at the FD/MAS Alliance Community Conference. A limited number of spots will be available for patient stories, and the PAC will help guide the selection process to maximize the diversity of experiences represented. Questions? If you have questions about this project, please reach out to email@example.com
Share your FD/MAS Story
Because we hope to capture the diversity of experiences within the FD/MAS community, this questionnaire is designed to quickly understand how the disease affects your life.
There is no one set of checkboxes or experiences that we are looking for. We hope to capture the stories of those deeply affected by FD/MAS as well as those whose diagnosis has little to no impact on their daily life. All questions are optional, and your honesty and comfort level are of the utmost importance.
FD/MAS patients need and deserve better treatments. FD/MAS Alliance is raising funds to strengthen our community and increase our investment in research and education to meet the needs of those living with FD/MAS.
When you donate, you manifest hope. There is no better gift than that.