News

Meet the 2024 Patient Advisory Council

Advocacy News Foundation News Patient Spotlight Uncategorized

We’re so proud to introduce our 2024 Patient Advisory Council, a group of community advisors and organizational ambassadors for the FD/MAS Alliance. In the last two years, the Patient Advisory Council has hosted numerous community socials and learning opportunities and spearheaded the incredible #FacesofFDMAS video initiative. Their guidance behind the scenes has been steady and […]

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Faces of FD/MAS: William’s Story

Patient Spotlight

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. Videos will be released throughout 2024 in celebration of FD/MAS Alliance’s 20th Anniversary. June is Pride month, and we’re […]

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Picture of left to right: Cindi Brandt Levin, Anne Corvelle, Tovah Burstein and Sarah Healy at the Million Dollar Bike Ride

Team FD/MAS 2024 Update!

Research News

UPDATED JUNE 18th 2024: We are excited to share that we’ve received over 150 donations for Team FD/MAS research through the UPenn Orphan Disease Center’s Million Dollar Bike Ride (MDBR). Thanks to a $30,000 match from UPENN and donations from the Association MAS/FD in France, we’ve already raised over $100,000. THANK YOU! But we’re not […]

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Team FD/MAS Dispatch!

Foundation News Research News

Following our May 21st $20 Tuesday rally, Team FD/MAS has exciting news to report! We have unlocked the UPenn match gift of $30,000!  Major thanks go to Association MAS/FD of France, led by Aurelie Lagneau who made a generous pledge that pushed Team FD/MAS over our first benchmark goal. Thanks to the 3 fundraisers, 15 […]

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Faces of FD/MAS: Corey’s Story

Patient Spotlight

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. Videos will be released throughout 2024 in celebration of FD/MAS Alliance’s 20th Anniversary. In honor of Mother’s Day and […]

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Team FD/MAS Research Update 2024

Research News

For ten years now, Team FD/MAS has been dedicated to funding promising research projects through the UPenn Orphan Disease Center’s Million Dollar Bike Ride. During that time, the community has supported 20 research projects to advance FD/MAS research and, ultimately, find a treatment or cure for FD/MAS. In 2021, Team FD/MAS led by Team Captain Cindi Brandt Levin and […]

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Faces of FD/MAS: Nikki’s Story

Patient Spotlight

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. Videos will be released throughout 2024 in celebration of FD/MAS Alliance’s 20th Anniversary. In celebration of Rare Disease Day […]

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Faces of FD/MAS: Dennis’s Story

Patient Spotlight

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. Videos will be released throughout 2024 in celebration of FD/MAS Alliance’s 20th Anniversary. In celebration of FD/MAS Global Awareness […]

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Team FD/MAS 2023 Research Grants Announced

Research News Uncategorized

FD/MAS Alliance is thrilled to share that three fibrous dysplasia, McCune-Albright syndrome (FD/MAS) research grants have been awarded from Team FD/MAS’s 2023 Million Dollar Bike Ride efforts! Last spring, Team FD/MAS raised $161,620 for FD/MAS-focused research through the UPenn Orphan Disease Center’s Million Dollar Bike Ride. After careful review of nine applications by the FD/MAS […]

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2023: BIG Impact, BIG gratitude, BIG plans!

Advocacy News

Happy holidays! Thank you for being an important part of the FD/MAS Alliance in 2023. From the FD/MAS Community Conference to federal funding announcements, and being highlighted at the NIH, it has been a terrific year and you are a key part of our strong community. Together, in 2024 we will accomplish even more. On […]

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