Twinning: HoG Working to Promote Hope in Bolivia

By Deniece Chevannes, MPH, CHES, Health Educator
This October Millie Rondon, HoG’s Office Manager, and I traveled to Bolivia to provide hands-on training to our twinning partners, Fundación Nacional de Hemofilia Bolivia (FUNAHEB). Bolivia, like many other developing countries, has scarce resources and care for inherited bleeding disorders is almost non-existent.

The goal of our twinning partnership with FUNAHEB is to help them establish a strong organization that advocates for improved care in Bolivia and creates a sense of community for those affected by bleeding disorders. During this visit, we provided training on managing a hemophilia organization, fundraising, establishing a medical advisory board and advocating for access to care.  In addition, we participated in an educational session and meeting with families and people affected by inherited bleeding disorders.

 Deniece, Millie, Luisa (WFH) and a mother 
 and son from Bolivia

Representatives from the World Federation of Hemophilia (WFH) and colleagues from the Fundación de la Hemofilia in Buenos Aires, Argentina also participated during this visit. I am happy to announce that the Fundación de la Hemofilia will be pursuing a medical twinning in Bolivia. If approved by the WFH, this partnership will teach doctors, nurses, physical therapists, social workers and other members of the comprehensive care staff at the Children’s Hospital in Santa Cruz how to manage and care for children with inherited bleeding disorders.

This recent training visit to Bolivia reminded me of how important it is to be a community in the bleeding disorder world. The first time I went to Bolivia I cried because of the severe need of the people, the lack of resources and access to care for people with inherited bleeding disorders.  I cried because of the stories mothers shared with me about how they were sure that their children would not live long lives due to their bleeding disorder. I cried because I could not only hear but feel that they had little hope of a future for their sons with hemophilia.

During this visit I cried because now I was hearing stories from mothers about how they were working with FUNAHEB to advocate for access to care. I heard stories of meetings held in each other’s homes to read chapters of the Spanish Hemophilia Handbooks HoG donated in order for them to learn more about bleeding disorders and how to manage care for their children.  I heard stories of traveling to different cities in Bolivia to educate doctors, nurses and the community at large on what is a bleeding disorder. I was hearing stories filled with hope!

 So now, I am hopeful that the medical twinning will be approved and our twinning partners in Bolivia will receive training in medical care which is desperately needed. I am hopeful that the continued advocacy work of FUNAHEB will lead to improved access to quality care for families affected by bleeding disorders in Bolivia. I am also honored to be a part of the HoG community that brings knowledge, compassion, and hope for a better future to the bleeding disorder community in Bolivia. Deniece, Luisa (WFH), family and members of FUNAHEB are pictured in the photo on the right.