The session, “WFH Highlight Session: the WFH Gene Therapy and World Bleeding Disorder Registries” was presented yesterday to an enthusiastic audience at the WFH Virtual Summit. The talks were given by Barbara Konkle, MD, WFH Medical member, Alfonso Iorio, MD, and Catherine Lambert, MD.
The main themes of the session were two very important WFH endeavours, the WFH Gene Therapy Registry (GTR) and the WFH World Bleeding Disorders Registry (WBDR). The speakers covered the new GTR, the collaboration between the WBDR and Patient Reported Outcomes, Burdens and Experiences (PROBE) project, and the successful experience of the Belgian-Ivoirian Twinning, which helped the Ivory Coast start collecting data on all of their hemophilia patients in the WBDR.
To watch sessions from the WFH Virtual Summit – Connecting the Global Bleeding Disorders Community, please click here.