WFH NETWORK

WFH works with NMO to support Japan Forum

The National Hemophilia Network of Japan organized a national patient forum in Nagoya, Japan, from June 9 to 10, 2017 and invited World Federation of Hemophilia (WFH) to participate. Twenty-six patient associations participated from all around the country. The theme of the forum was “Your Life! – 8,053 for the Tomorrow”, a reference to the 8,053 people in Japan with inherited bleeding disorders such as hemophilia. The National Hemophilia Network of Japan, a WFH national member organization (NMO), hosted the forum which also included participation by the WFH.

The meeting started with an opening address by the president of the National Hemophilia Network of Japan, followed by a presentation from Alain Baumann, WFH CEO. Baumann highlighted the work the WFH does globally and in Asia. He then went on to introduce Sachi Satapathy, the new WFH Regional Manager for South Asia & East Asia to the forum participants. Programs and initiatives led by WFH were highlighted, such as the Annual Global Survey, the Twinning Program, and NMO training.

Japan-forum

The National Hemophilia Network of Japan organized this forum to provide a platform for patients to learn more about how they can better manage their bleeding disorder. There were several parallel sessions for patients covering topics such as how children with a bleeding disorder can best manage their condition, sports for people with hemophilia, inhibitors, how to learn with your nurse, and specific sessions for the challenges faced by people with hemophilia at different age brackets in their life. Brian O’Mahony, CEO of the Irish Haemophilia Society, gave a presentation titled “Hemophilia Treatment and Cost-Effectiveness” which explained how the tendering process can better manage costs in hemophilia care.

The forum was an excellent example of a national patient organization and the WFH working together to improve hemophilia care. Both organizations will continue to work together and build on each other’s strengths in the future.