Twinning: HoG Is Working to Improve Hemophilia Care in Bolivia

Horizons in Hemophilia, September 2011

By Deniece Chevannes, Health Educator

This past August two representatives from HoG traveled to South America to meet with families and members of the Federación Boliviana de Hemofilia to explore the possibility of implementing a project to improve the lives of people and families in Bolivia who are impacted by bleeding disorders.

Bolivia is a landlocked country in South America.  More than 60% of the population is indigenous and speaks a dialect of the Quechua, Aymará or Guaraní native language in addition to speaking Spanish.  Like many other developing countries, Bolivia has scarce resources and care for bleeding disorders is almost non-existent.

The purpose of the visit was to explore the possibility of establishing a twinning project. A program of the World Federation of Hemophilia, twinning projects pair an established hemophilia organization with an emerging hemophilia organization to share knowledge, experiences and best practices.

During the visit the HoG representatives spoke with families affected by bleeding disorders.  Currently there is no diagnostic testing for bleeding disorders in Bolivia. Most people who have a bleeding disorder do not know their diagnosis and do not have access to treatment centers.

The families shared stories of feeling isolated and worrying about the health and quality of life of their children.  A twinning project would help families with bleeding disorders in Bolivia feel part of a larger worldwide community.  HoG expects to receive approval of the project from WFH this fall.

Watch for news about ways your family can help improve the lives of families with bleeding disorders in Bolivia!