The World Federation of Hemophilia (WFH) Youth Leadership Program provides tools to the bleeding disorders community’s next generation to help them become effective leaders. From September 26 to 28, 2019, the WFH hosted a Youth Leadership workshop in Montreal, Canada.
Eleven youths between 18 and 30 years old from nine countries took part in the training. The workshop was kicked off with remarks from Alain Baumann, WFH CEO, Jan-Willem André de la Porte, WFH Patron, and Deon York, WFH Board Member, who all talked about the rewards and challenges of being a leader. Later, several youths had the opportunity to share their experiences regarding their projects and activities within their patient organization as part of a best practices session.
The second day of the workshop included presentations and discussions on the importance of inclusion in the bleeding disorders community, with the understanding that people with conditions other than hemophilia—such as rare bleeding disorders (RBDs) and platelet disorders—can feel like they are part of the community and can advocate as well for adequate care and treatment. The day also covered important topics such as youth engagement, recruitment and retention. One highlight of the day was the personal testimonies from local leaders David Page and Christian Pelletier from the Canadian Hemophilia Society, who shared their stories about how they overcame the obstacles and life challenges that come with living with hemophilia.
What followed next were several educational talks that went over the detailed aspects of effective leadership. Participants were introduced to methods of effective communication and practiced public speaking. They also learned about how to use social media for outreach, fundraising and for building alliances in the community. Later, the participants were divided into groups and were tasked with writing social media texts that would get a reaction (either a like or a share post) from three different types of audiences.
The third day of the workshop began with conversations on disclosure, communication and sexuality, led by Frederica Cassis, psychoeducator and WFH Psychosocial Committee Secretary. The participants also had the chance to watch the world-premiere of the WFH educational video “Hemophilia, Relationships and Intimacy”.
Finally, the ever-important topic of leadership strategies was covered. This part of the workshop included details on advocacy and building strong partnerships; using WFH Annual Global Survey (AGS) data for advocacy; project planning for youth activities and planning events. The participants were given a chance to do a mock interview or meeting with a government official in order to practice their advocacy skills.
All in all, the participants were pleased with the workshop. “[It] inspires and motivates young people. It is amazing to have people living with hemophilia come together and share their experiences, achievements and challenges,” said Daymanie Persaud, from the Guyana Hemophilia Society.
The WFH wishes to acknowledge the financial contribution of Roche. Without their support the WFH Youth Leadership Workshop would not have been able to take place.