Quality Data Collection
Quality data are extremely useful in advocating for better care for people with bleeding disorders. This Fact Sheet introduces the rationale for data collection, the criteria for quality data, the keys for successful quality data collection, and examples of how quality data collection can provide the foundation of effective advocacy.
Guide to National Tenders for the Purchase of Clotting Factor Concentrates
This guide explains how a national procurement system of factor concentrates can help to ensure that people with bleeding disorders have access to treatment which is not only sufficient in quantity, but also meets the required standards in relation to safety, efficacy, and quality. The second edition includes diverse case studies, discussion of prolonged half-life […]
Genetic Counselling for Hemophilia
Genetic counselling constitutes an integral part of the comprehensive hemophilia care team providing people with hemophilia, and their families, clinical and scientific information, supporting individuals through the decision-making process regarding prenatal and carrier testing, and offering individualized psychosocial assessment and counselling before and after genetic testing. This resource introduces genetic counsellors, the genetic counselling process, […]
State of the Art XXXI International Congress of the World Federation of Hemophilia
This special issue of Haemophilia contains reviews and original research reports from selected scientific sessions presented at the XXXI WFH Congress, Melbourne, Australia, 11-15 May 2014.
WFH 2014 World Congress – ePosters
Compendium of Assessment Tools
Hemophilia is a rare disease and its management is multi-faceted. With advances in medical care including prophylactic factor replacement, the need for outcome assessment tools that are valid, reliable, sensitive to change, and predictive has become increasingly apparent. Physical status (joint health), functional ability, bleeding symptoms, and quality of life can now be measured using […]
Report on the Annual Global Survey 2013
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.
What is Prophylaxis? – Farsi
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: Setswana 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 […]
A Journey of the Heart
Social workers from around the United States and Canada were asked to write from their hearts about a patient or a mentor who has profoundly impacted their work with adults and children in the bleeding disorders community. This collection of essays aims to share these stories with the community at large as a way to […]
Proceedings of the WFH’s Eighth Global Forum on the Safety and Supply of Treatment Products for Bleeding Disorders
A summary of discussions held at the World Federation of Hemophilia’s Global Forum on the Safety and Supply of Hemophilia Treatment Products, which brings together patient groups, healthcare providers, regulators, industry representatives, and not-for-profit fractionators.
Report on the Annual Global Survey 2012
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 2011
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.