The publication of these two articles underscores our commitment to increasing the identification and diagnosis of people with bleeding disorders (PWBDs) by disseminating scientifically supported recommendations. Our aim is to raise global awareness and improve the diagnosis and care of PWBDs.
The two publications advocate for engaging governments and other stakeholders to secure funding for outreach, and for the development of point-of-care (POC) diagnostic devices based on the recently established Target Product Profile (TPP) for hemophilia and VWD. They also emphasize the importance of promoting multistakeholder collaboration and customizing outreach programs for regional contexts. By implementing patient outreach coupled with point-of-care diagnostics, identification and diagnosis can be accelerated, thereby reaching undiagnosed populations who otherwise stand no chance of accessing sufficient care.
“A foundation to better care: Target product profile for hemophilia and von Willebrand disease point-of-care diagnostics” was published in the August issue of Haemophilia. This letter to the editor describes a TPP for POC diagnostic devices for hemophilia and VWD, outlining clinical objectives, target populations, and desired outcomes for POC devices. The TPP lays the foundation for future innovations in POC devices. The definition of optimal and minimal acceptable device features has been described with low-resource and remote settings in mind—a key geographic target area for identifying new PWBDs. To read the letter, please click here.
The second article, “Bridging the gap: Survey highlights challenges and solutions in outreach and identification of people with inherited bleeding disorders” was published in September and focuses on patient outreach initiatives. The article is based on a comprehensive survey involving WFH national member organizations (NMOs) and other patient associations from across the globe. It identifies challenges and barriers to be overcome in areas such as resource mobilization, awareness-raising, and the need for multistakeholder collaboration and government commitment. Additionally, it recommends the use of a POC, as described above, as a tool for identifying PWBD, especially in rural and remote areas, to take a holistic approach to outreach and identification. To read the article, please click here.
The WFH invites stakeholders and organizations to consider implementing the above recommendations so that together, we can make a tangible difference in the lives of those with inherited bleeding disorders. If you have any questions, feel free to contact the WFH at [email protected].