Advocacy during COVID-19: what can we do in Africa?
The COVID-19 pandemic has significantly affected the bleeding disorders community, and many countries have seen their governments shift their focus and resources to combating the pandemic. It is important for NMOs to remain aware of the changes in government priorities and take a proactive approach to ensure that the needs of the local bleeding disorders […]
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 […]
Webinar for the Middle East | Effective Patient Education Programs for Bleeding Disorders
Patient Education is a core function of the work of any national member organization (NMO). It plays a vital role in enhancing patient care and outcomes. An educated patient is not only better able to manage their condition, but they are also better placed to support NMO efforts in advocating for improved access to care […]
Inhibitors – Think differently | Virtual Summit 2020
The development of inhibitory antibodies to therapeutic factor VIII (FVIII) in up to 40% of people with severe hemophilia A (HA) is the major complication in treatment/prevention of hemorrhages. The reasons some people with HA develop inhibitors while others do not, remain unclear. In this session from the WFH 2020 Virtual Summit, Sebastien Lacroix-Desmazes, Kathleen […]
Redefining prophylaxis in the modern era | Virtual Summit 2020
The currently evolving novel therapies for the management of hemophilia has ushered in a new era characterized by improved prophylaxis targets and outcomes. In this session from the WFH 2020 Virtual Summit, Johnny Mahlangu, Victor Blanchette, Robert Klamroth and Emna Gouider redefine prophylaxis in the modern era by revisiting its definition, presenting data to support […]
Virtual workshop: Creators and innovators: NMOs investing in youth
Listen to this 75-minute workshop that took place on 26th November 2020, moderated by Clive Smith (UK), WFH lay member, to explore youth engagement practices around the world, and to help participants understand the benefits of active youth involvement in national member organizations (NMO). This session features a debate contest involving Deniece Chevannes (USA), new […]
WFH Guidelines for the Management of Hemophilia | Virtual Summit 2020
In this session from the WFH 2020 Virtual Summit, Glenn Pierce, Alok Srivastava, Steven Pipe, Manuel Carcao, Margaret Ragni and Johnny Mahlangu present and discuss updates to the WFH Guidelines for the Management of Hemophilia. Discussion topics include hemostatic agents, prophylaxis, inhibitors, and treatment of specific hemorrhages. Click below to access more on-demand Virtual Summit […]
Patient Focus – ASH ISTH NHF WFH Guidelines on the Diagnosis and Management of VWD
Listen to this patient-focused 60-minute webinar, presented on June 16, 2020 at the World Federation of Hemophilia (WFH) Virtual Summit, to get a preview of two of the recommendations resulting from the ASH ISTH NHF ISTH WFH 2021 VWD Guidelines. Learn why international clinical guidelines are particularly important to this community, how they were developed, […]
International VWD guidelines and how to use them
Listen to this 75-minute webinar, presented on November 20, 2020 at the World Federation of Hemophilia (WFH) Global Summit on Women & Girls with Inherited Bleeding Disorders, to learn more about how the ASH ISTH NHF ISTH WFH 2021 VWD Guidelines can be used for advocacy in ensuring adequate treatment and care for persons living […]
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 […]