News

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 […]

Click to Read

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 […]

Click to Read

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 […]

Click to Read

Faces of FD/MAS – 2024 Photo Sharing

FDMAS Awareness Week

February 20th-27th is FD/MAS Global Awareness Week. FD/MAS Global Awareness Week is a coordinated international campaign to raise awareness of fibrous dysplasia and McCune-Albright syndrome (FD/MAS) and build support for public health and research that will improve the lives of FD/MAS patients. In 2024 we celebrate the fifth annual FD/MAS Global Awareness Week with the theme #FacesofFDMAS […]

Click to Read

NIDCR Honors 25 years of FD/MAS Research

Research News Uncategorized

Immediately following the FD/MAS Community Conference, NIDCR hosted a symposium to celebrate the institute’s 25-year legacy of research to understand and treat fibrous dysplasia/McCune-Albright syndrome (FD/MAS) as part of its 75th anniversary. The event featured Nobel Laureate Brian Kobilka, M.D., who won the 2012 Nobel Prize in Chemistry for his work on G-protein-coupled receptors. The […]

Click to Read

Exciting Announcement: Researchers awarded a U.S. Department of Defense grant to fund a four-year study of Fibrous Dysplasia (FD)

Foundation News Research News

Here’s some exciting news to share with families, friends, and donors! Researchers at Harvard School of Dental Medicine (HSDM) and Massachusetts General Hospital (MGH) awarded a U.S. Department of Defense grant to fund a four-year study of Fibrous Dysplasia (FD) HSDM, and MGH will receive just over $3 million for this study. “This funding will […]

Click to Read

FD/MAS Global Awareness Week Social -Hosted by the PAC

FDMAS Awareness Week Research News

  Join us Sunday, February 26th, from 2:00 – 3:30 pm EST (7:00-8:30 pm GMT) for an informal community social. We’ll start by watching a short TED Talk before we open it up to general conversation about our experiences with fibrous dysplasia, McCune-Albright syndrome (FD/MAS and life in general. It can be a powerful experience […]

Click to Read

FD/MAS and Research Webinar -Postponed and Rescheduled

Research News

Please note: the FD/MAS and Research webinar has been postponed and rescheduled for January 13th, 2023 at 3:00 pm EST. Many community members ask: Where are we on the path to a treatment? When will I be able to take this injection as a pill? What is the focus of research on FD/MAS these days? […]

Click to Read

FD/MAS Alliance’s Fiscal Year 2022 Impact Report

Foundation News

The FY 2022 Annual Report outlines all the accomplishments that you and our community have made possible in the last year.  These pages are filled with hope and with the faces of those who know that, because of the generosity of our donors, they are not alone, and better evidence-based treatments are possible. Your generosity […]

Click to Read

Take the Lead: Optimizing Palliative Care

Foundation News Treatment News

While not every person with FD/MAS has pain, many in the FD/MAS community do experience significant pain, and their concerns are not always taken seriously.  Because of the varied responses that patients receive to their concerns, it’s important to understand the resources available for addressing FD/MAS-related pain.  To explore this topic, we spoke to FD/MAS […]

Click to Read