WBDR 2020 Data Report
The World Bleeding Disorders Registry (WBDR) 2020 Data Report provides aggregate data on more than 7,000 people with hemophilia around the globe who are enrolled in the WBDR.
Frequently Asked Questions on Women and Girls with Bleeding Disorders
This resource has also been translated into the following languages, with permission from the WFH, by NMOs/Other Organizations: German Many women and girls also experience symptoms of Hemophilia. Some women live with their symptoms for years without being diagnosed or even suspecting they have a bleeding disorder. This fact sheet includes answers to questions such […]
Guidelines for the Management of Hemophilia – Ukrainian
The 3rd edition is available in: English, French, Spanish, Arabic, Russian The 3rd edition has also been translated into the following languages, with permission from the WFH, by NMOs/Other Organizations: Georgian, Portuguese The 2nd edition is available in: Simplified Chinese The 2nd edition has also been translated into the following languages, with permission from the […]
What is Prophylaxis? – Setswana
The 2021 edition is available in: English, Spanish, French, Arabic, Russian, Simplified Chinese This resource has also been translated into the following languages, with permission from the WFH, by NMOs: Farsi This is not an official WFH translation. This resource has been translated with permission by a WFH National Member Organization (NMO), and is shared here […]
What is Hemophilia? – Setswana
The 2023 edition is available: 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: Amharic This is not an official WFH translation. This resource has been translated with permission by […]
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 […]
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 […]
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 […]