Resources » Page 16

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 […]

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.

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 […]