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 […]
Snapshot: ASH ISTH NHF WFH Guideline Recommendations for the Management of von Willebrand Disease (VWD)
This one-page summary presents the highlights of the ASH ISTH NHF WFH Guidelines on the Management of von Willebrand Disease (VWD). It outlines what is covered in the guidelines, why they matter and who they affect. Click here to access the full ASH ISTH NHF WFH VWD Guidelines.
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 […]
WFH Development Grant Program Webinar
This 1-hour webinar on the WFH Development Grant Program is presented by Dawn Rotellini (Chair, Development Grants Selection Committee) and Salome Mekhuzla (WFH Director, Global Development). The Development Grant Program aims to encourage new and innovative projects to support the inherited bleeding disorders community worldwide. This webinar provides WFH NMOs with an overview of the […]
Advocacy During Covid-19: Having our Voices Heard
This 90-minute webinar on advocacy for National Member Organizations (NMOs) took place on October 27th, 2020. Dr. Alexsandro dos Santos Machado (Brazil), Dr. Munira Borhany (Pakistan) and James Kago (Kenya) discussed the advocacy challenges and activities of their NMOs during the COVID-19 pandemic. WFH Board Member Dawn Rotellini (USA) moderated the session and provided different advocacy […]
Report on the Annual Global Survey 2019
The Report on the Annual Global Survey (AGS) includes demographic and treatment data, providing a global snapshot of people with hemophilia, von Willebrand disease, other rare factor deficiencies, and inherited platelet disorders around the world.
What is Hemophilia? – Amharic
The 2023 edition is available in: English, Spanish, French, Arabic, Russian, Simplified Chinese This edition is also available in: Japanese This edition of the resource has also been translated into the following language, with permission from the WFH, by NMOs: Setswana This is not an official WFH translation. This resource has been translated with permission […]