Building Bridges to Beat FD/MAS

Working with Researchers at the American Society for Bone and Mineral Research Annual Meeting.

Every year, the American Society for Bone and Mineral Research (ASBMR) holds an enormous annual meeting for bone researchers. This September, the Fibrous Dysplasia Foundation (FDF) sent three delegates to that meeting: Catherine Fairchild (President), Kelly Cohen (Committee on Research Programs) and Deanna Portero (Executive Director). Their travel was partially funded through a Patient-Centered Outcomes Research Institute (PCORI) Pipeline-to-Proposal Award (Bridging Rare Disease Patients and Data through Novel Research Partnerships), administered on behalf of PCORI by Catherine Fairchild.  

“The FDF had multiple goals for ASBMR 2016. In the new FD/MAS Patient Registry we ask patients which research questions about how to treat FD/MAS they think are most important to answer, so we needed to find researchers interested in those questions. We spoke with current FD/MAS researchers to understand which research questions they are most interested in answering. We’ll compare the information from those researchers and the patients who respond through the registry. That way we make sure that we focus on researching high-priority questions as quickly as possible.”

Clinical Researcher Natasha Appelman-Dijkstra from the Netherlands speaks with Deanna Portero, Executive Director of the FDF

“FDF also has a long-term goal of increasing the number of researchers who are deeply involved in FD/MAS research. That means we need to increase interest in studying FD/MAS among researchers who are not currently studying FD/MAS, or not doing as much work in FD/MAS as they could be. We’re advancing this goal in multiple ways: by making sure researchers know about the available research funding opportunities like Million Dollar Bike Ride funding, by explaining how researchers can apply to access deidentified data from the FD/MAS Patient Registry, and by connecting new or inactive researchers with experienced, active researchers who have similar interests.”

Fairchild was surprised and excited about the number of new researchers she met while at the conference, “It was awesome meeting international clinical researchers for the first time, and introducing them to the researchers the Foundation has been working with for a long time. Different doctors all over the world have been trying a variety of treatment strategies. It’s important that language and geography don’t get in the way of the best treatment options getting to the most patients.”

The meeting left Cohen energized and hopeful. “I’m happy that we were able to meet with a few young, early-career scientists who have done some work on FD/MAS. It’s important that they learn that the Fibrous Dysplasia Foundation and the FD/MAS community is serious about supporting FD/MAS research. Those researchers might want to focus their careers on studying FD/MAS, but we make it easier for them to make the decision to specialize in FD/MAS research when we make it clear how the Foundation will provide support.”

To learn more about the researchers FDF met at ASBMR, check out this recent photo album on Facebook. After you take a look, “like” the Fibrous Dysplasia Foundation so that you receive important updates!