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 […]
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 […]
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 […]
Youth Resilience During COVID-19 – Staying Strong Together!
Listen to this 1-hour webinar that took place on 3 September 2020 to learn stories of youth engagement around the world and wellness tips from a psychosocial expert. The panel of youth speakers included Salomón Cárcamo Bonilla (Honduras), Jessica Page (U.K.) and Jodarsen P. Arnachellum (Mauritius). Edward Kuebler (U.S.A), outgoing WFH Psychosocial Committee chair, provided […]
WBDR 2019 Data Report
The World Bleeding Disorders Registry (WBDR) 2019 Data Report provides aggregate data on more than 4,000 people with hemophilia around the globe who are registered in the WBDR.
Stepping up and not stepping out: a nursing and psychosocial perspective to COVID-19
Listen to this 1-hour webinar presented on 4 May 2020, chaired by Glenn Pierce, MD, PhD (WFH VP Medical). Kate Khair (U.K.), WFH Nurses Committee chair and Marlène Beijlevelt (Netherlands), WFH Nurses Committee member, presented a nursing perspective on how to deal with the current pandemic. Ed Kuebler (U.S.A), WFH Psychosocial Committee chair and Richa […]
WBDR 2018 Data Report
The World Bleeding Disorders Registry (WBDR) 2018 Data Report provides aggregate data on more than 1100 people with hemophilia around the globe who are registered in the WBDR.
Report on the Annual Global Survey 2017
Compiled annually, the Annual Global Survey (AGS) provides demographic and other data on people with hemophilia, von Willebrand disease, other rare factor deficiencies, and inherited platelet disorders throughout the world.
Report on the Annual Global Survey 2016
Compiled annually, the Annual Global Survey (AGS) provides demographic and other data on people with hemophilia, von Willebrand disease, other rare factor deficiencies, and inherited platelet disorders throughout the world.
Report on the Annual Global Survey 2015
Compiled annually, the Annual Global Survey (AGS) provides demographic and other data on people with hemophilia, von Willebrand disease, other rare factor deficiencies, and inherited platelet disorders throughout the world.