The Fibrous Dysplasia Foundation (FDF) strives to advance FD/MAS research and to ensure that the patient voice remains in the center of scientific advancements. In an effort to further both of these goals, FDF attended the National Organization of Rare Disorders (NORD’s) annual summit in Washington, DC this November. There, Teneasha Washington, FDF’s Research Programs Manager met with researchers, pharmaceutical industry experts, as well as other patient advocates to discuss rare diseases, and the opportunities that the FD/MAS community has for moving towards a treatment and a cure.
“One of our main goals at this meeting was to attend sessions led by the FDA and to learn more about the new era of patient-focused innovation,” said Washington. Understanding the evolving focus of large institutions such as the FDA helps FDF further patient advocacy initiatives, and identify best practices in executing and promoting patient-centered research. Patients and patient advocacy organizations are contributing more and more to the search for effective treatments. The FDA recognizes this shifting role, and is coming up with new ways to collaborate with patient communities to help bring more rare disease treatments to market.
This year, FDF was asked to present on the state of the FD/MAS Patient Registry during poster sessions at the NORD Summit as well as during NORD’s private Registry User Group Meeting after the NORD Summit. FDF’s poster on the FD/MAS Patient Registry shared news of the tremendous growth and valuable data that FD/MAS patients and caregivers have provided the FD/MAS Patient Registry. “It was especially exciting that we were asked to present at the NORD Summit in addition to the Registry User Group Meeting, because the audience at the NORD Summit included many leading research institutions and pharmaceutical representatives who may find that data in the Registry useful for future projects,” said Washington.
The Registry User Group meeting united FDF with other patient organizations who also use the NORD platform to power their patient registries online. “This follow-up meeting offered an opportunity for FDF to speak with other Study Coordinators, and share challenges and strategies for making our respective studies a success,” said Washington. In addition to discussing project strategies, this group of patient advocates discussed improvements they’d like to see in the registry platform that could make each patient organization’s patient registry more powerful for patients and researchers.
FDF will continue to build the FD/MAS Patient Registry, and nurture mutually beneficial alliances with other rare disease organizations. “Though our individual diseases may be different, our aim is the same,” said Washington, “To find cures and create a better future for those living with rare disease.”