Twinning: HoG Working to Close the Gap and Improve Hemophilia Care in Bolivia > Publications

Twinning: HoG Working to Close the Gap and Improve Hemophilia Care in Bolivia

Published November 13, 2012

Horizons in Hemophilia, November 2012

By Deniece Chevannes, Health Educator

This past month representatives from HoG traveled to South America to meet with and provide training to the members of the Fundación Nacional de Hemophilia Bolivia (FUNAHEB). FUNAHEB is the nonprofit organization in Bolivia that we are working with in our twinning project through the World Federation of Hemophilia (WFH). Training in Bolivia

Bolivia, like many other developing countries, has scarce resources. Care for people who have inherited bleeding disorders is almost non-existent. The goal of our twinning project with Bolivia is to help them establish a strong organization that is able to provide a sense of community to people affected by bleeding disorders. Additionally HoG works with FUNAHEB to help them advocate for improved care and resources for people affected by bleeding disorders in Bolivia.

During three days the HoG health educator and office manager provided hands-on training on managing a hemophilia organization, fundraising, and volunteer recruitment. The HoG staff members also helped the Bolivian organization develop a strategic plan. In addition there were training sessions on effective advocacy and providing bleeding disorder education to doctors and families.

The work HoG is doing in Bolivia is one more example of our commitment to help the World Federation of Hemophilia “close the gap.” We also work with the WFH on its humanitarian aid project. Since January 2012, we have shipped over 4.2 million units of factor to 32 countries. The factor products donated this year have been Humate P, Benefix, Kogenate FS and Hemofil. Some of the grateful recipients this year have been in the countries of Kenya, Honduras, Vietnam, Uzbekistan, Paraguay, Mongolia, Kyrgyz Republic and Bolivia.

Vic and Leigh The staff at WFH in Montreal organizes the distribution of donated factor and sends all the necessary customs paperwork to HoG. Our staff organizes the storage, packaging, and FedEx shipping to the selected countries. Shipping companies hired by the pharmaceutical companies have drivers sometimes driving all night across several states to arrive at the HoG offices early in the mornings. When a truck arrives, HoG staff gladly takes a break from their regular duties to help unload the trucks and get the donated factor ready for shipping to where it is desperately needed.