On August 24 to 26, 2019, the World Federation of Hemophilia (WFH) ASEAN regional workshop was held in Hanoi, Vietnam. Welcoming 26 participants from 12 different countries, the workshop allowed people with hemophilia—along with carriers and family members—to get together and exchange best practices on the management of hemophilia.
Professor Bach Quoc Khanh, President of the Vietnam Hemophilia Association, opened the event, and then Alain Bauman, Chief Executive Officer of the WFH, gave a presentation on the current work the WFH is doing, highlighting the growth of the organization. This led to a productive conversation about the future role of the WFH and how the organization can help best support NMOs in the coming years.
Karen Villanueva, International Alliance of Patients’ Organization board member, then gave a talk on the human rights-based approach of care as well as the patient-centred health system, emphasizing the importance of establishing external engagement to generate broader support for the bleeding disorder community.
Keswali Yensudchai, Head of Fundraising and Communication at ActionAid Thailand, led a session on fundraising. She taught participants about the different kinds of donors that exist and encouraged them to prioritize relationship-building with donors in order to nurture donor relations, and, ultimately, preserve the donor’s ongoing commitment to the cause. After learning new fundraising techniques and strategies, participants had the chance to try their hand at fundraising through a role-playing session.
WFH board member Deon York opened the second day of the workshop with a presentation. During the discussion that followed, he commended the participating groups on the sense of community that they are cultivating in their countries, and he encouraged them to value those communities as a source of strength that can help them achieve their goals. He also encouraged all NMOs to prioritize succession planning to make sure that these communities are sustainable over time.
Brian O’Mahony then led a session on tender agreements, followed by a mock tender exercise to help participants develop their own skills. He encouraged participants to prioritize their needs during discussions and provided tips on how to make sure that their voices are heard during negotiations.
Participants then had the opportunity to break out into groups based on their roles in the bleeding disorder community, giving them a chance to relate to each other’s experiences and grow their support networks. At the end of the workshop, participants had learned much that could be applied in their countries, including ways to better advocate for hemophilia and other bleeding disorder patients.