WFH NETWORK

Now available: The WFH Report on the Annual Global Survey 2018

The World Federation of Hemophilia (WFH) Report on the Annual Global Survey (AGS) 2018 is now available! This survey provides a global snapshot of the progress in hemophilia patient identification and access to care. It is designed to give WFH national member organizations (NMOs), healthcare providers and policy makers an overview of patterns and trends in treatment, and the ability to identify areas where improvements are necessary.

This year marks a major milestone in the history of the AGS: it’s the 20th anniversary of the survey! The last two decades have seen the report evolve in important ways. A record number of NMOs are taking part in the survey. The current report features 125 NMOs from all around the world—an increase of 92% since 1999. In addition to countries like Australia, Germany, Ireland, South Korea, New Zealand, Poland, Portugal, and Venezuela who have been contributing for the full two-decade history of the report, the 2018 report has the Bahamas, Benin, Namibia, and Tajikistan contributing for the very first time.

Over 337,000 patients are part of this year’s report (210,454 Hemophilia A, B and type unknown; 78,547 von Willebrand disease; 48,640 other rare bleeding disorders). This represents a 7% increase versus the numbers reported in 2017—and a 204% increase in the numbers reported since the first year of the survey in 1999.

The Report on the Annual Global Survey 2018 has new features, including comparisons and time trends since 1999; reporting of extended half-life products (for both donated WFH Humanitarian Aid Program products and purchased products); new figures with a focus on other rare bleeding disorders and global factor distribution; and reporting of the non-factor product emicizumab-kxwh (Hemlibra). There are also updated and improved interactive graphs that are more user-friendly than ever, making the AGS a great tool for advocacy. NMOs can now better understand the data and analyses in the report—and use the data to develop tailored recommendations specific to their country and reality to help support their advocacy and research objectives.

To read the 2018 WFH Annual Global Survey (AGS), please click here.

The Report on the Annual Global Survey 2018 was developed under the supervision of the WFH Data & Demographics Committee. For more information about the Annual Global Survey, please contact globalsurvey@wfh.org.