WFH NETWORK

World Hemophilia Day and “Reaching Out: The First Step to Care”

On April 17 of this year, our community will come together to celebrate World Hemophilia Day. The theme of this year’s big day is “Reaching Out: The First Step to Care”. For the WFH, a big part of the first step to care is the outreach and identification of undiagnosed people with bleeding disorders. This focus area is of critical importance to our community, because so many people have a bleeding disorder but are not getting the kind of care they need to enjoy a normal quality of life.

Patient outreach and identification is about finding individuals with hemophilia or other bleeding disorders—including von Willebrand disease—who have not yet been diagnosed, or whose health needs are not being met by healthcare services. These patients can be found through awareness-raising campaigns and educational activities.

Assad Haffar, MD, WFH Director of Humanitarian Aid

“If we look at the numbers, the need is clear. We know what the range is for the prevalence of hemophilia and other bleeding disorders for a region, as a percentage. And we know the actual percentage of identified patients of a country. So, when you compare the two, and see that the number of identified people is far below what you would expect to see—you know there is a problem.”

Outreach and identification has been a focus area for the WFH for many years, but now, more than ever, the WFH is supporting this objective by putting resources towards diagnosis training for healthcare professionals and educational materials. By doing this, and by working with patient organizations, caregivers and health authorities, the WFH can support the many organizations who are working hard to find more people with a bleeding disorder—and bring those people into the comprehensive support network that is the bleeding disorders community.

You can help too! This April, show us that you care and that you are these to support the patients and caregivers in our community. Be part of World Hemophilia Day 2019 and help make a difference.