With twenty-seven years of experience working with the bleeding disorder community, World Federation of Hemophilia (WFH) Psychosocial Committee Chair and 2019 Hemophilia Alliance Travel Grant recipient Ed Kuebler continues to be delighted at the commitment the community displays in pursuit of the WFH vision of Treatment for All.
Kuebler’s history with the global community dates to 2005 when his Hemophilia Treatment Center (HTC) participated in the WFH Twinning Program with Peru. That experience led him to attend the 2006 WFH World Congress in Vancouver, Canada, and then to join the Psychosocial Committee in 2008. He notes with a laugh that it all started when he designed a Youth Leadership program for a summer camp in Texas, U.S.A.
The 2019 Hemophilia Alliance Travel Grant program allowed Kuebler to attend, for the first time, the WFH International Musculoskeletal Congress, held in Madrid, Spain. He learned a lot from a group discussion with physiotherapists analyzing a shift in approach to care from patient-centred to patient-driven, which they feel provides the patient and their family with an even stronger voice. Kuebler agrees with this approach and feels that it will lead to better outcomes. The sharing of knowledge and space between the different disciplines, Kuebler believes, is an essential component of the WFH mission. Bringing together experts with perspectives on patient care allows for endless opportunities for growth and new possibilities. In Madrid, Kuebler was fortunate to hear of the vast contributions physiotherapists and orthopedic physicians make to the community. He knows that being there first-hand to participate in the discussions, hear the presentations and talk with these professionals in person will have a lasting impact on his practice.
It is hard for Kuebler to think of what his life would be like without being able to attend WFH meetings. He now has an extensive network of friends and colleagues from around the world who have opened his eyes to the inequality in access to treatment around the world. He is grateful that partners like the Hemophilia Alliance see the benefit in having U.S.A-based healthcare professionals attend WFH meetings. The opportunity to meet people from diverse cultures and to learn from their knowledge and experience is one that has profoundly impacted his own work as a social worker and educator. Kuebler believes he is now more aware of his unconscious biases in his own practice, a change he knows will lead to greater sensitivity and better relations with his patients.
Kuebler would like to thank The Hemophilia Alliance and the WFH for having the foresight to see the advantages of having healthcare professionals attend international conferences. In his role as Chair of the WFH Psychosocial Committee, he arrived home from the 2018 WFH World Congress inspired and with many ideas he will take back to his committee—including exploring the possibility of joint sessions at future Congresses.
The World Federation of Hemophilia proudly acknowledges The Hemophilia Alliance’s generosity and commitment to advancing the knowledge of U.S.A-based healthcare professionals within the bleeding disorders community. To learn more about their work, click here.
