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.