Report on the Annual Global Survey 2023
The Report on 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. The WFH does not engage in the practice of medicine and under no circumstances recommends particular treatment for specific individuals. For […]
Publishing in the Haemophilia Journal: Opportunities and challenges | WFH World Congress 2024
Publishing in Haemophilia—the official journal of the WFH—presents both opportunities and challenges for researchers and practitioners in the field. While it offers a platform to disseminate new findings and contribute to the scientific community, there are hurdles to be overcome such as rigorous peer reviews and the need to meet specific publication standards. Through interactive […]
WBDR 2023 Data Report
The World Bleeding Disorders Registry (WBDR) 2023 Data Report provides aggregate data on more than 14,000 people with hemophilia & von Willebrand disease around the globe who are enrolled in the WBDR. The WFH does not engage in the practice of medicine and under no circumstances recommends particular treatment for specific individuals. For diagnosis or […]
Report on the Annual Global Survey 2022
The Report on 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. The WFH does not engage in the practice of medicine and under no circumstances recommends particular treatment for specific individuals. For […]
WBDR 2022 Data Report
The World Bleeding Disorders Registry (WBDR) 2022 Data Report provides aggregate data on more than 11,000 people with hemophilia around the globe who are enrolled in the WBDR. The WFH does not engage in the practice of medicine and under no circumstances recommends particular treatment for specific individuals. For diagnosis or consultation on a specific […]
Global Policy and Access Summit 2022
The presentations and discussions of the second edition of the WFH Global Policy and Access Summit (GPAS) center around improving care and access to treatment. They include speakers and participants from local and international partner organizations, national government representatives, healthcare professionals, WFH NMO leaders, and bleeding disorders advocates. The WFH does not engage in the […]
Report on the Annual Global Survey 2021
The Report on 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.
Data & Demographics workshop | WFH World Congress 2022
In this workshop from the WFH 2022 World Congress, listen to Miguel Escobar, Alfonso Iorio, Donna Coffin, Ellia Tootoonchian, Emily Ayoub, Toong Youttananukorn, Mark Skinner, Mayss Naccache, Thi Mai Nguyen, Jeff Stonebraker, and Declan Noone address improving patient outcomes through data. The WFH does not engage in the practice of medicine and under no circumstances […]
WBDR 2021 Data Report
The World Bleeding Disorders Registry (WBDR) 2021 Data Report provides aggregate data on more than 9,000 people with hemophilia around the globe who are enrolled in the WBDR. The WFH does not engage in the practice of medicine and under no circumstances recommends particular treatment for specific individuals. For diagnosis or consultation on a specific […]
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 […]
Better data, better patient outcomes: 20 years of data collection | Virtual Summit 2020
This workshop from the WFH 2020 Virtual Summit, presented by Ellia Tootoonchian, Mark Skinner, Donna Coffin, Alfonso Iorio, Emna Gouider-Belhadjali and Jeff Stonebraker, is intended for healthcare professionals engaged in clinical research and patient leaders and organizations who have an active interest in using health data in their work. The WFH does not engage in […]
Report on the Annual Global Survey 2020
The Report on 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.