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 […]
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.
Exercises for People with Hemophilia – Amharic
Also Available In: English, Spanish, French, Arabic, Russian, Simplified Chinese 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 with their kind permission. Translating organizations are encouraged to have translations reviewed by local experts, the WFH is not responsible […]
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 […]
Collaborations, Connections and COVID19: Twinning Stories from Near and Far
This 1-hour webinar was moderated by Deniece Chevannes (USA), Chair of the HOT Twinning Committee on September 17, 2020. Patricia Silva, MD (Mozambique), Yuri Zhulyov (Russia), and Santosh Manivannan (India) discussed how their Twinning partnerships are coping with the COVID-19 pandemic. Stephanie Pineda, WFH Program Coordinator, presented Twinning Program highlights. The webinar also includes a […]
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 […]
WFH Global VWD Call to Action: The World’s Response
Listen to this webinar which took place on August 26, 2020. Moderated by Dawn Rotellini (USA), the webinar features an overview of von Willebrand Disease by Magdy El Ekiaby, MD (Egypt), information about the Global VWD Call to Action by Luisa Durante (Canada), and presentations by Chedia Aroua (Tunisia), Cassie Osejo (Panama), and Louise Ellwood […]
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.
Dental care for people with bleeding disorders during COVID-19— what has changed?
Listen to this 1-hour webinar presented on 3 June 2020, chaired by Glenn Pierce, MD, PhD (WFH VP Medical). Presenters Maria Elvira Pizzigatti Correa (Brazil), WFH Dental Committee member; Zikra Alkhayal (Saudi Arabia), WFH Dental Committee member; and Alison Dougall (Ireland), past Chair of the WFH Dental Committee offer recommendations on how to deal with […]
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 […]
Report on the Annual Global Survey 2018
This report celebrates the 20th anniversary of the Annual Global Survey (AGS). It 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.