World Federation of Hemophilia Global National Member Training and World Congress
Members of the bleeding disorder community from around the world gathered in Kuala Lumpur, Maylasia on April 17-22 for the World Federation of Hemophilia’s (WFH) Global National Member Organization Training (GNMOT) and World Congress. Hemophilia of Georgia (HoG) was well represented by members of the senior leadership, clinical, and community engagement teams as well as two Youth Fellows who grew up attending Camp Wannaklot and are now engaged volunteers.
The GNMOT brought together leaders from over 130 countries for dynamic, hands-on sessions on April 17 and 18. HoG’s own Alesha Wright and Maggie Olson-Conquest led an engaging workshop titled “Volunteer Engagement and Retention” and HoG’s Chief Policy and Compliance Officer Deniece Chevannes facilitated a session in Spanish called “Effective Advocacy Strategies” and hosted a panel titled “Youth Engagement.” Other sessions at GNMOT covered governance, leadership, and organizational health. During the GNMOT the Youth Fellows completed their two yearlong WFH Youth Leadership Training program.
After the GNMOT concluded, all participants joined others in the community for the World Congress for four days of plenaries, workshops, poster sessions and networking. During the World Congress Deniece Chevannes chaired a session titled “Access to Care — Not Just Access to Treatment”, and all members of the HoG team facilitated a table in the exhibit hall to promote Hemophilia of Georgia and to share our knowledge with members of the bleeding disorder community from around the world.
HoG’s Youth Fellows were incredibly grateful for the opportunity to attend the GNMOT and World Congress. Here’s what they had to say:
- “Attending the Global NMO Training meant a lot to me. Growing up with a severe bleeding disorder isn’t easy, but I believe one day it will be. I always try my best to remind others how important it is to tell their story and advocate for themselves. Reconnecting with the global bleeding disorder community reminded me how fortunate I am regarding access to care. I couldn’t be more grateful to represent Hemophilia of Georgia.”
- “Attending the GNMOT and World Congress means building lifelong connections and gaining the skills needed to become a stronger advocate.”
- “I will bring what I learned from other youth leaders back to Hemophilia of Georgia! I want to use these ideas to strengthen our programs, help more patients the way HoG has helped me, and provide the same support and sense of belonging I received growing up being a part of the HoG community!”
- “With the knowledge and experience I’ve gained, I hope to apply these skills in my everyday workplace and within my NMO to advocate effectively and educate others.”
This experience reflects HoG’s ongoing commitment to building the next generation of leaders and strengthening the future of care and advocacy, both here in Georgia and around the globe.