The leadership of the World Federation of Hemophilia (WFH) officially kicked of the first day of the WFH Virtual Summit: Connecting the Global Bleeding Disorders Community today during the Opening Plenary.
WFH President Alain Weill spoke about the fact that while the COVID-19 pandemic forced the cancellation of the WFH 2020 World Congress, the community couldn’t wait until 2022 for the next Congress, which is why the WFH Virtual Summit is so important. Weill continued by saying that at the 2018 Congress in Glasgow, he launched two Calls to Action. The first was for industry to develop a low-cost diagnosis device for hemophilia. The second was a request for more pharmaceutical companies to join the WFH Humanitarian Aid Program. He is pleased to report that both calls were answered: several manufacturers are currently working on a hemophilia diagnosis device, and both Bayer and Roche have responded to the Call to Action to join the Program. Weill went on to say that the announcement that Sanofi and Sobi have signed a 5 year contract renewal and have pledged another up to 500 million IUs of factor to the WFH Humanitarian Aid Program is encouraging news indeed. He ended by stating that the challenges of the COVID-19 crisis have shown that in order to thrive, the WFH must continue to be creative and innovative.
Glenn Pierce, MD, PhD, WFH Vice President, Medical, spoke about the rich medical and multidisciplinary content available at the WFH Virtual Summit. The talked about the exciting potential of gene therapy, the upcoming WFH Guidelines for the Management of Hemophilia, 3rd edition, the WFH Humanitarian Aid Program that is continuing to make a difference, the growing success of the WFH World Bleeding Disorders Registry (WBDR) and the imminent launch of the WFH Gene Therapy Registry (GTR). Pierce also encouraged participants to watch the symposia being offered by our partners at the end of each Virtual Summit day.
Alain Baumann, CEO of the WFH, spoke about the amazing number of people who came to him to affirm their support for the WFH despite the current challenges being faced by the community due to the COVID-19 pandemic. He said it made him realize that the bleeding disorders community is more than just a community: it’s a family—of patients, partners and volunteers. Baumann took a moment to thank the many volunteers who support the WFH every day, saying that their commitment has been amazing. He also thanked WFH staff for putting on the WFH Virtual Summit in such a short period of time and under such difficult circumstances. Baumann also thanked the sponsors for supporting the event and expressed pride in the successful start of the pre-Summit on Sunday—while also saying he hoped the next Congress would give everyone a chance to meet face-to-face once again. Lastly, Baumann congratulated Alain Weill for his service as WFH President over the last eight years. As Weill’s tenure comes to a close, Alain Baumann said that although many elements would figure in the President’s legacy, Weill’s stance against racism and discrimination should inspire us all.
To watch sessions from the WFH Virtual Summit – Connecting the Global Bleeding Disorders Community, please click here.