From July 21 to 22, Panama City welcomed the third World Federation of Hemophilia (WFH) Youth Leadership Workshop. The event was organized through the WFH Youth Leadership program, and was held to enhance the skills of future youth leaders so they can advocate for better bleeding disorders care in their own countries.
Seventeen youths attended the event, from 15 countries, and received a wide range of training tailored to the realities of today’s world. This included the following topics: training on social media, led by Shelly Reed, Social Media Training Specialist; training on advocacy; and training on project planning.
Naouras Hagouchi, from Morocco, said of the workshop, “It was very stimulating, and I found that the content could be used not only when dealing with hemophilia but also in other aspects of our day-to-day lives… I want to thank [the WFH] very much for giving me the opportunity to participate in the youth leadership workshop.”
The workshop also featured an important milestone: it was the first time a WFH Youth Leadership Workshop covered the sensitive topics of transitioning to adulthood, disclosure, communication, relationships, and sexuality. The fact that the WFH recognized the importance of these topics was appreciated by participants. Also appreciated was the “safe space” environment of the workshop that allowed everyone involved to comfortably share and discuss any personal issues or doubts that they were facing with both their peers and their instructors. Frederica Cassis, Clinical Psychologist, Psychoeducator and member of the WFH Psychosocial committee, led these discussions and made the warm and welcoming environment possible.
Participants also took part in an event which was made possible by technology not available just a few years ago: a Facebook Live video stream which brought speakers from many different locations together at the workshop. The stream featured a panel discussion led by youth participants from Honduras, Venezuela, Australia, Bulgaria, and Panama. Members of the panel gave presentations on recent activities by their national patient organizations, shared accomplishments realized by their youth groups, and also provided overviews of the challenges they are facing and their future goals. In just a few weeks, the Facebook Live video has been viewed nearly 3,000 times.