World Federation of Hemophilia Youth Leadership Training

Hemophilia of Georgia’s (HoG) Vice President of Public Policy, Health Equity & Research, Deniece Chevannes, and Director of Health Education, Alesha Wright, attended the World Federation of Hemophilia (WFH) Youth Leadership Training held May 8 - 9, 2023 and Comprehensive Care Summit (CSS): New Developments in Bleeding Disorders and Musculoskeletal (MSK) on May 10 - 12, 2023 in Buenos Aires, Argentina. With Youth Leadership being a key strategic focus for the WFH, HoG nominated four young adult clients to also attend the leadership training and participate in CSS. These young adults grew up attending Camp Wannaklot, participated in Leaders in Training at Camp Wannaklot, and served as camp volunteers. Additionally, one of them is a current member of the Junior Board of Directors.  

To learn about and explore Buenos Aires, the young adults visited Feria De San Telmo, a notable outdoor market, of unique artisans and antiques and Caminito, a street museum of colorful painted dwellings. They also experienced a live tango performance and throughout the visit indulged in amazing food.

The Youth Leadership Training consisted of young adults from 14 countries with educational sessions on succession planning and the importance of having youth voice heard, key concepts of project development (i.e. identifying needs, developing smart objectives and expected outcomes, monitoring and evaluating project), emotional health, musculoskeletal health, and sexual health.

During the training, the young adults visited La Fundación de la Hemofilia, Argentina National Member Organization (NMO). The most prestigious hemophilia treatment center in the country for its comprehensive, specialized, and multidisciplinary medical care.

HoG’s young leaders were extremely grateful for the opportunity to attend the leadership training and CSS. They shared the following on overall experience and next action steps:

• “…so grateful for the opportunity to be able to meet and connect with others across the globe who not only share a bleeding disorder but are also advocating for those with inherited bleeding disorders through their NMO.”
• “…favorite part was when we were able to sit and talk with representatives from the other countries and just talk about their organizations and how they interact with each other. It was interesting to hear how their youth fit in to their broader organizations and how they plan to grow their influence and membership.”
• “…listening to those from other countries, specifically India and Congo, makes me realize how fortunate I am to be in an organization that has the resources to help those with bleeding disorders, in my country, live a good quality life.”
• “…attend more WFH events so I can continue to be an advocate for the people around me.”
• “…reaching out to my NMO with structured proposals or ideas that align with the organization’s mission and goals. Whether it is spreading awareness, fundraising, or discovering ways to make resources available for everyone.”
• “…use the information learned to educate the youth we impact when it comes to what works and what does not.”

These young leaders connected and gained friendships with other participants from around the world, engaged with international organizations and experts, enhanced leadership skills, and learned about new developments in bleeding disorders diagnosis and treatment. Lastly, because of the training, these leaders proposed to implement a 3-month social media campaign to increase awareness of ultra-rare bleeding disorders.