Guidelines for the Management of Hemophilia – Portuguese
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, Ukrainian The 2nd edition is available in: Simplified Chinese The 2nd edition has also been translated into the following languages, with permission from the […]
Advocating for Better Care for People with VWD | September 1 2021
Listen to this 90-minute webinar presented on September 1, 2021 to learn about advocating for better care using the ASH ISTH NHF WFH 2021 Guidelines on the Diagnosis and Management of von Willebrand Disease (VWD). The session was moderated by Magdy El Ekiaby, MD (WFH VWD & RBD Committee). Susie Couper (Member of the WFH […]
Advocacy during COVID-19: what can we do in Africa? – Portuguese
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: 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 […]
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 […]
Patient Focus – ASH ISTH NHF WFH Guidelines on the Diagnosis and Management of VWD
Listen to this patient-focused 60-minute webinar, presented on June 16, 2020 at the World Federation of Hemophilia (WFH) Virtual Summit, to get a preview of two of the recommendations resulting from the ASH ISTH NHF ISTH WFH 2021 VWD Guidelines. Learn why international clinical guidelines are particularly important to this community, how they were developed, […]
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 […]
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 […]
Annual Global Survey Mini Report 2: Age
The WFH Annual Global Survey (AGS) mini reports are advocacy tools that provide more in-depth perspective and context to AGS data. The second Mini Report, based on 2017 AGS data, highlights the age of patients with hemophilia. Age data can be an important tool to better understand diagnosis and treatment in a country.
Hemophilia Societies: Challenges and Development
Outlines the common challenges faced by hemophilia societies at various stages of development and offers practical solutions to help these organizations meet the needs of people with bleeding disorders.
Developing and Sustaining an Effective Lobbying Campaign
A hemophilia organization can advocate for change with doctors, hospitals, health authorities, government officials, or politicians. This publication outlines the various steps in putting together an integrated lobbying strategy.
Making Your Case Effectively: A Guide to Government Relations
Hemophilia societies work with governments and health authorities to raise the level of care so that people with hemophilia can live healthy lives. This monograph provides organizations with some practical guidance to improve the effectiveness of government relations.