Free papers: Data collection and patient outcomes | Virtual Summit 2020

In this session from the WFH 2020 Virtual Summit, Mayss Naccache, Emily Ayoub, Toong Youttananukorn and Ellia Tootoonchian discuss: “The World Federation of Hemophilia World Bleeding Disorders Registry – 2 years update” “Data is the new currency: The World Bleeding Disorders Registry Data Quality Accreditation Program” “Report on the Annual Global Survey – 20 years […]

Report on the Annual Global Survey 2020

The Report on Annual Global Survey 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.

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 […]

Report on the Annual Global Survey 2019

The Report on the Annual Global Survey 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.

Report on the Annual Global Survey 2018

This report celebrates the 20th anniversary of the Annual Global Survey. 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.

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.

Report on the Annual Global Survey 2017

Compiled annually, this report 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 2016

Compiled annually, this report provides demographic and other data on people with hemophilia, von Willebrand disease, other rare factor deficiencies, and inherited platelet disorders throughout the world.

Annual Global Survey Mini Report 1: Gender

The WFH Annual Global Survey (AGS) mini reports are advocacy tools that provide more in-depth perspective and context to AGS data. Lack of diagnosis and treatment for women and girls with bleeding disorders remains a challenge in our community. Highlighting gender data from the AGS can help bring awareness to the issues facing women and […]

Report on the Annual Global Survey 2015

Compiled annually, this report provides demographic and other data on people with hemophilia, von Willebrand disease, other rare factor deficiencies, and inherited platelet disorders throughout the world.