Gene therapy: the unfolding story | Virtual Summit 2020
We are still learning about gene therapy. Each patient experience is different, and gene therapy is not for everyone – either by choice or by exclusion because of the antibodies. In this session from the WFH 2020 Virtual Summit, Debra Pollard, John Pasi, David Page, Garrett Hayes, Rob Schroeder and Enrique Preza Hernandez discuss: What […]
Glenn Pierce and Steve Pipe discuss the latest updates on Gene Therapy for hemophilia | July 2021
The WFH does not engage in the practice of medicine and under no circumstances recommends particular treatment for specific individuals. For diagnosis or consultation on a specific medical problem, the WFH recommends that you contact your physician or local treatment centre. Before administering any products, the WFH urges patients to check dosages with a physician […]
Advocacy During COVID-19: Voices from Europe
Listen to this 1-hour webinar that took place on 27 November 2020, chaired by Baiba Zimele (WFH lay member). Presenters Ellia Tootoonchian (WFH) and Donna Coffin (WFH) discuss the latest data of the Annual Global Survey including patient demographics, while Brian O’Mahony (Ireland), Dejan Petrovic (Serbia) and Dr. James Gauci (Malta) provide information on advocacy […]
CDC Webinar: Overview of WFH Treatment Guidelines, 3rd Edition
On December 10th, 2020 Glenn Pierce, WFH VP Medical moderated this one-hour webinar in the Public Health Webinar Series on Blood Disorders presented by the CDC. The webinar discussed how the WFH Guidelines for the Management of Hemophilia, 3rd edition provides opportunities to improve the standard of diagnosis and care for people with hemophilia around […]
Gene therapy: Is robust scientific inquiry the missing factor?
Listen to this 60-minute interactive webinar presented on 11 December 2020 to explore patient perspectives related to scientific inquiry of gene therapy. The session was moderated by David Page (Canadian Hemophilia Society). The panelists included Glenn Pierce, MD, PhD (WFH Vice President, Medical), Radoslaw Kaczmarek, PhD (Polish Hemophilia Society), Brian O’Mahony (Irish Haemophilia Society), and […]
The World Federation of Hemophilia Gene Therapy Registry – Informational Webinar
Listen to this 45-minute webinar presented on 9 November 2020 to learn more about the World Federation of Hemophilia (WFH) Gene Therapy Registry (GTR). Barbara Konkle, MD (WFH Board of Directors), Glenn Pierce, MD, PhD (WFH VP Medical) and Wolfgang Miesbach, MD (GTR Steering Committee member) discuss the protocol and core data set, the implementation […]