The COVID-19 pandemic has impacted people everywhere in many ways, including limiting the ability for communities to meet in person. As an organization that holds meetings all over the world, the World Federation of Hemophilia (WFH) had to quickly pivot in 2020. Dozens of scheduled in person meetings were adapted into virtual events. This change was very successful, with the organization’s main event—the WFH Virtual Summit: Connecting the Global Bleeding Disorders Community—being the best-attended WFH event ever, with more than 8,550 participants from 160 countries taking part.
The WFH currently has a number of on-line events scheduled for 2021, covering topics such as state of the art medical education, gene therapy, global youth training, women and girls with bleeding disorders (WGBD), advocacy, and research and treatment products for bleeding disorders. Here’s a sneak peek at three important events the WFH is bringing to the bleeding disorders community in the next few months.
The invitation-only WFH Gene Therapy Round Table (GTRT) series began in 2018, and was held virtually for the first time in 2020. This important event in the bleeding disorders community brings together WFH national member organizations (NMOs), patient advocates, health care professionals, regulators and industry representatives to discuss current global developments and the expected challenges related to gene therapy for hemophilia. The world of gene therapy is developing rapidly, and the WFH GTRT will cover the key challenges and discussions related to the field, including global access, regulatory and financial challenges, the unknowns of gene therapy and long-term follow-up of safety and efficacy. The next meetings are this June and September.
WFH Women’s & Girls Summit
The first WFH Global Summit on Women and Girls—held in November 2020—was a great success, with over 600 participants from around the world taking part. In 2021, the WFH continues to be committed to improving the care, diagnosis, and recognition of women and girls with bleeding disorders. Next month, the WFH is hosting a second global summit on Women & Girls to continue to build awareness of how females are impacted by bleeding disorders. The event will help participants gain knowledge on the challenges experienced by these individuals—such as stigma and the struggle to be properly diagnosed. It will also offer insights on comprehensive clinical management and will explore how organizations are advocating for adequate care and treatment for female patients.
WFH Global Forum on Research and Treatment Product for Bleeding Disorders
This November, researchers and experts from around the world will participate in the WFH Global Forum on Research and Treatment Product for Bleeding Disorders. This event will cover issues related to the safety and supply of treatment products, and recent research developments—including non-factor treatment products. The forum will also offer participants the chance to discuss critical issues and challenges in the areas of research and clinical trials related to bleeding disorders and their treatment products.
Video recordings will be made available for some of these events. Please check in on wfh.org after the event for more information.
To find out more about World Federation of Hemophilia events, please visit our Calendar of Events page here.
This article originally appeared in the Spring/Summer 2021 issue of HemWare.