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FD/MAS Alliance Launches a Webinar Series

FD/MAS Community Connects

FD/MAS Alliance launched a monthly webinar series, live-streamed and available for free in July 2021. Topics range from medical education to more specific research updates, and also include social topics of particular interest to the community.

We are especially grateful to IONIS, Ultragenyx, and our Charlie’s Angels giving circle for supporting this series. This critical, ongoing educational work would not be possible without our generous supporters.

Our September discussion will focus on Craniofacial Care. Click here to learn more.

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A Father’s Strength

In light of the sudden passing of Scott Mumper and as a way to honor his spirit, we now share his powerful reflection on parenting someone with FD/MAS. His words inspire us and we hope they inspire you too. Our thoughts and prayers are with his family at this difficult time. Your daughter has McCune-Albright […]

Bone Pain and Fibrous Dysplasia, McCune-Albright syndrome (FD/MAS)

In July 2021 FD/MAS Alliance launched a monthly webinar series, live-streamed and available for free. Topics will range from medical education to more specific research updates, and will also include social topics of particular interest to the community. We are especially grateful to IONIS, Ultragenyx, and our Charlie’s Angels giving circle for supporting this series. These […]

2021 FD/MAS Research Funding Opportunity Announced

We’re thrilled to announce that research grants of up to $80,867 to study fibrous dysplasia or McCune-Albright syndrome are now available thanks to the work of Team FD/MAS in the UPenn Orphan Disease Center’s Million Dollar Bike Ride. The one-page letter of interest (LOI) is due Thursday, September 16th, 2021 by 8pm EST. Please read […]

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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 this 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.