Five von Willebrand Disease Outreach Programs: Secrets to Success

At the World Federation of Hemophilia (WFH) World Congress in Orlando, U.S.A, Andra James (U.S.A.) chaired a discussion between Amy Griffith (Canada), Peter Noun (Lebanon), Robert Sidonio (U.S.A.), Ana-Rebeca Jaloma (Mexico), and Magdy El Ekiaby (Egypt) on the strategies, challenges, and successes of von Willebrand disease (VWD) outreach programs in each of their countries. To watch a short highlight video from this discussion, please click here.

The education of healthcare providers (HCPs), people at risk of bleeding disorders, and the general population has been key to the success of many of these programs. Peter Noun explained how comprehensive programs running at 20 rural centres in Lebanon have educated HCPs on disease awareness, and given them the tools to recognize, diagnose, and manage women with VWD in rural areas. The creation of multidisciplinary care teams using local laboratories, and raising awareness of the program though local media have also been essential to the program’s success.

Amy Griffith, an ambassador of Code Rouge—an organization that supports women with bleeding disorders—explained that the VWD outreach program in Canada has, in her words, Put a face to a disease that a lot of people really didn’t understand. Code Rouge has been working towards addressing the gaps in conversation, bleeding needs, and awareness in the medical community and general population. Amy Griffith said that people with VWD are experts in their own disease and Peter Noun added that it is very important for physicians to listen to the person who has a bleeding disorder.

In Guadalajara, Mexico, HCPs, the government, and hemophilia associations came together to establish a centre for the comprehensive diagnosis and treatment of VWD. The program is now collaborating with a U.S. institution to elucidate the link between the characteristics of VWD and the genetic abnormalities that underlie the disease, explained Ana-Rebeca Jaloma.

Magdy El Ekiaby said that in Egypt, Creating an awareness in the HCPs and among their patients and families could lead to more referrals and then more diagnoses.” He explained that the success of the programs in Alexandria and Cairo were two-fold; the first was educating HCPs to ensure they provided timely results and were aware of where to refer patients, and the second was educating families to break down the social barriers associated with bleeding disorders.

The focus of a quality improvement program in the U.S.A. has been educating emergency room physicians and other front-line HCPs, such as hospitalists. Robert Sidonio mentioned that, traditionally, these HCPs do not perform extensive bleeding assessments; however, the emergency room appears to be a place where people at risk of bleeding disorders can be readily identified. The outreach program in the U.S.A. is educating front-line physicians on how to use bleeding assessment tools to identify people at risk for bleeding disorders. It is also educating on standards of care for the management of VWD, including the importance of referrals to a hematologist and a gynecologist. Robert Sidonio particularly emphasized the need for access to adolescent gynecologists for some of the young women he sees in the emergency room.

You can also read two new papers on the phenotypic and genotypic diagnosis of VWD that were recently published by the WFH in English and Spanish on Hemophilia World Online by clicking here.

To learn more about these five very different programs, with their practical suggestions that are relevant to any bleeding disorders outreach campaign, and to watch all three videos, please visit the WFH eLearning Platform.

For more information and resources about von Willebrand disease, visit the WFH VWD eLearning Centre.