Grand Hyatt, São Paulo, Brazil

September 3-4, 2019

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Speaker

Antoine (Toni) Daher, President, Casa Hunter / President, the Brazilian Federation of Rare Disease Associations (Febrararas)

Born in Beirut (Lebanon) on March 13, 1975, Antoine Daher is a Brazilian businessman who dedicates his life to the cause of Rare Diseases. He speaks Arabic, French, English and Portuguese and has a master’s degree in Political and Administrative Sciences with an extension in Political Science. In 2012, he became involved in advocacy when he discovered that his son has Hunter Syndrome (MPS II), an innate metabolic error. Founder and president of Casa Hunter, Toni – as he is often called – has been devoting his life to helping Brazilians with rare diseases. With a strong presence in Congress, he fights for public health policies and laws that ensure a better life for people with rare diseases. Since January 2019, Antoine Daher is the president of Febrararas, the Brazilian Federation of Rare Disease Associations. He is also a member of the Rare Diseases Commission of the Federal Council of Medicine in Brazil (since 2015) and president of Casa dos Raros.