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| WFH president Mark Skinner with Antonia Luque de Garrido, International Frank Schnabel Volunteer Award winner |
The International Frank Schnabel Volunteer Award was presented to Antonia Luque de Garrido, General Coordinator of the Venezuelan Association of Hemophilia (AVH). Named in memory of the WFH founder, the award honours an individual with hemophilia, or a family member of a person with hemophilia, who has contributed significantly to furthering the mission and goals of the WFH.
As the mother of a son with hemophilia, Antonia has worked for 20 years to improve access to care and treatment for the bleeding disorders community in Venezuela and Latin America as a whole. She’s a determined woman who won’t take no for an answer. Through her advocacy efforts, she convinced the government to increase its purchase of factor concentrates. Now all Venezuelans with hemophilia receive concentrates, and the country has the highest treatment level in Latin America.
Antonia and AVH started their association with the WFH in 1996 when it launched Operation Improvement, one of its earliest country programs. Another key achievement since then has been the development of outreach and registry initiatives. Now 90% of Venezuela’s patients are in a national registry and 10 association chapters have been established throughout the country.
Outside of Venezuela, Antonia has become a key leader in Latin America, helping other patient organizations grow and develop their outreach and advocacy skills. She has worked with organizations in Costa Rica, the Dominican Republic, Ecuador, Mexico, Nicaragua, and Panama to help improve care for people with hemophilia.
Under Antonia’s leadership the AVH has the distinction of being the only National Member Organization to have won a Twin of the Year Award more than once. The Venezuelan Association first won this award in 2002 for its twinning partnership with Nicaragua. Then in 2004, Antonia’s organization won again for its twinning with the Dominican Republic, where she helped develop a patient registry and improved advocacy efforts, outreach, and diagnosis.
After Congress, Antonia wrote to WFH expressing the importance of our partnership and of having the courage and determination to make a difference:
During this journey, I always felt supported and accompanied by you, my friends in the World Federation of Hemophilia (WFH). The first time Line (Robillard) listened to me share my ideas, she said that they were good but that I needed to organize them better and suggested that I get help from another organization that already had experience. As a result the WFH sent me to Spain to get trained. Since then I have been committed to collaborating with the WFH and I have been able to apply all that I learned within my own country and I hope that this has made a difference.
I continue to be available to help in any way that I can. If you have firm ideas of what you would like to accomplish you can do it.
It is important that we work towards having the rights to health and to life recognized for people with hemophilia.
Last Updated October 2010 |
