From May 8-10, the WFH hosted its national member organization meeting in picturesque Creswick, Australia where 101 delegates from across the world came together to discuss issues facing their organizations and share lessons learned since they had last met.
Daily plenary sessions focused on important issues such as NMO sharing best practices, an update from the WFH and a very popular session on women with bleeding disorders. Sonia Adolf, MD, Arlette Ruiz-Saez, MD, Alison Street, MD, and Pamela Wilton shared professional and personal stories about the status of women in the bleeding disorder community and what progress has been made, as well as what progress needs to be made. This session was followed by Marijke van den Berg, MD, Brian O’Mahony, and Alok Srivastava, MD, speaking on the roles NMOs and people with hemophilia play in research, with some insight into the new WFH Research Program.
The plenary sessions were simultaneously translated into four languages: English, French, Spanish and Russian, and allowed for experts from across the world to overcome language barriers and impart important information to the group.
Daily workshops were also held and were designed to assist NMOs in dealing with their professional commitments as well as improving their service to patients. A series of experts reviewed the role that data plays in the economics of bleeding disorder care and how NMOs can use data as a tool in advocating for their patients. Richa Mohan reviewed what kind of psycho-social support NMOs can provide to patients and families and how to empower patients to take an active role in their psychosocial care. Brian O’Mahony and Cesar Garrido presented in English and Spanish on the benefits and possible consequences of accepting industry funding and how to maintain control of the agenda.
There was also a workshop facilitated by Suzanne O’Callaghan on the ways to identify, train and sustain potential youth leaders in an NMO and what other organizations have experienced in their youth leadership programs.