Fibrous Dysplasia Research Gains More Scientific Attention at Bone Mineral Research Meeting

This September, FD/MAS Alliance sent Executive Director Adrienne McBride, to attend the American Society of Bone and Mineral Research (ASBMR) meeting, which Dr. Michael Collins called “a real triumph for the fibrous dysplasia/McCune-Albright syndrome (FD/MAS) research community.”  Drs. Michael Collins, Acting Chair of the FD/MAS Alliance Scientific Advisory Council (SAC), and Alison Boyce, Chair of the FD/MAS Alliance Medical Advisory Council (MAC), introduced her to researchers making a difference in the study of FD/MAS.   It was an honor to meet members of our SAC in person and researchers who work for pharmaceutical companies.  One of the meeting’s highlights, the Annual Review Of Important Developments In Basic And Translational Science, was given by Drs. Henry Kronenberg and Dolores Shoback, two members of our SAC.  In addition to this presentation, there were many other moments where the conference focused on FD/MAS studies, including:

Drs. Alison Boyce (left) and Luis Fernandez de Casto (right)

Drs. Alison Boyce (left) and Luis Fernandez de Castro (right)

13 presentations on FD/MAS, many of which were headlined by members of the SAC and MAC.  Of these, there were:

In addition to the conference, Adrienne attended a full-day pre-meeting of the Rare Bone Disease Alliance (RBDA), a thriving network of 13 patient advocacy organizations and 26 medical and scientific advisors.  The RBDA is governed by a steering committee comprised of three patient advocacy organization representatives and four medical/scientific professionals.  The RBDA’s mission is to accelerate rare bone disease research, both basic and clinical, by bringing together the patient experience, journey, “voice,” and the most up-to-date science in the field.  The RBDA, previously the Rare Bone Disease Patient Network, has worked closely with ASBMR since its inception to promote rare bone disease programming at the ASBMR Annual Meeting.  After years of zoom meetings and phone calls, it was an honor and an inspiration to meet peers in the community who are running analogous organizations.

Dr. Mara Riminucci, who has received multiple Team FD/MAS research awards, shared that rare bone diseases were not represented when she first started attending ASBMR Conferences.  This year’s focus on rare diseases, especially fibrous dysplasia, is truly encouraging.  In sum, this was an extraordinary meeting with real insights into the disease’s mechanisms and ideas likely to lead to treatments.  The FD/MAS community looks to Dr. Alison Boyce’s upcoming webinar in December 2022 that will discuss the current path of FD/MAS research.  Stay tuned for more information.