WFH NETWORK

Global bleeding disorders community comes together at WFH 2018 World Congress

There was energy in the air at the World Federation of Hemophilia (WFH) 2018 World Congress in Glasgow, Scotland this past May. The five-day event was a great success, with over 5,000 participants from around the world taking part in nearly 300 sessions and connecting with countless colleagues and community members.

“We’re always proud of our Congresses,” stated Alain Weill, President of the WFH. “But this one was special because of the encouraging progress our community has made in the past two years since the last WFH Congress.”

A number of individuals received awards during the Congress. Unlike past Congresses where there was an awards ceremony, this year the recipients were honoured in an innovative way—during different events throughout the Congress. Miguel Tezanos received the WFH International Healthcare Volunteer Award, which honours a volunteer healthcare professional who has contributed significantly to furthering the mission and goals of the WFH; Megan Adediran, María del Carmen Agurcia and Bogdan Gajewski received the WFH President’s Award, which recognizes an individual or organization that has served society for a significant duration and made a substantial impact on the hemophilia community within their country; Parttraporn Isarangkura was given the WFH International Lifetime Achievement Award, which recognizes an individual’s career-long contribution to furthering the mission and goals of the WFH in a particular region, country, or professional area; and Thomas Sannié received the WFH International Frank Schnabel Volunteer Award, which honours an individual with hemophilia, or a family member of a person with hemophilia who has contributed significantly to further the mission and goals of the WFH. Also, the recipients of the Susan Skinner Memorial Fund Scholarship—which supports the training, education, and leadership development of young women with bleeding disorders—were announced.

Alain Weill’s President’s Address covered many issues in the bleeding disorders community but focused on two powerful calls to action. The first call to action acknowledged the urgent need to develop a diagnostic device that is reliable, easy to use and affordable. The second Call to Action focused on making a commitment to increasing factor concentrate production, ensuring gene therapy is accessible to all regardless of income, and improving the accessibility and affordability of non-substitutional therapies. An important announcement was made during the Congress: the launch of the WFH Development Grant Program. This new endeavour aims to provide the tools and support that the bleeding disorders community needs to implement projects.

The Congress offered a wide range of events for participants, including a number of scientific sessions that covered the topics that are trending in the community today. Talks included “Gene therapy—trail blazer to game changer”, “How to measure outcomes in hemophilia: patient, physician and payer perspectives”, “Advocating for better outcomes—using data to build the evidence base” and “New developments and key concepts in coagulation therapies safety, supply, and access”.

There were also several sessions dedicated to highlighting the many successes of WFH programs, including the WFH Humanitarian Aid Program, the Twinning Program, the International External Quality Assessment Scheme (IEQAS), the Global Alliance for Progress (GAP) Program and the World Bleeding Disorders Registry (WBDR). The great work being done by International Hemophilia Training Centres (IHTCs) was also underlined.

The Congress also featured a very Scottish cultural event, and ended with a classy farewell dinner. One participant summed up the WFH 2018 World Congress well when she said, “This Congress brings together science, medicine and a strong community. It’s a great mix.”

The WFH will build on the success of the 2018 Congress for future events—specifically the Musculoskeletal (MSK) Congress and the Global Forum in 2019, as well as the WFH 2020 World Congress in Kuala Lumpur. We hope to see you at both!