Tania María Onzi Pietrobelli
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TANIA MARÍA ONZI PIETROBELLI
Lobbying Coordinator
Brasil
Mother of a person with Severe Hemophilia A. She was a teacher of the deaf in a public school for 25 years. Since the birth of her son, she has worked voluntarily in the education of family members and people with hemophilia and public organizations in the search for better treatments.
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In 1992, Tania founded the Association of Hemophiliacs of Rio Grande do Sul. From 2005 to 2009 she was vice president of the Brazilian Federation of Hemophilia (FBH) and in 2009 she assumed the presidency of the FBH, a position she has held since then. Under her management, in 2011/2012, Tania obtained an increase in the budget from the Federal Senate to implement prophylactic treatment in Brazil for all people with hemophilia. Since 2017 she has been a member of the board of directors of the Coalition of the Americas (CoA) as Coordinator of Public and Institutional Relations.