February 22nd, 2025– 24 Hour Open Office
If you’ve ever met someone who shares your rare disease diagnosis, you know how moving the experience can be. As the Patient Advisory Council planned for FD/MAS Global Awareness Week in 2025, we wanted to create an open opportunity for as many people in our community as possible to connect with others and access resources.
That’s why the PAC developed the 24-Hour Open Office.
On February 22nd, from midnight to midnight, a virtual conference room will be opened and hosted by volunteers from across the FD/MAS community. We invite you to drop in to say hi and meet other folks from the FD/MAS Alliance Staff, Board of Directors, and Patient Advisory Council as well as volunteers from FD/MAS patient groups from around the world.
The volunteer hosts will have experience living with FD/MAS as patients and caregivers themselves. They’ll also be ready with resources for those who have questions or concerns.
Our goal is to meet community members in as many time zones as possible. Even if you do not have pressing medical questions, we hope you will drop in by clicking the link below to say hi at some point during the day on February 22nd, 2025.