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ASH 2016 | The work and aims of AltaVoice

Kyle Brown, Founder and CEO of AltaVoice, San Mateo, CA gives an overview of the work and aims of AltaVoice. AltaVoice approaches patient communities and works with patient advocacy groups and other trusted organizations to collect information directly from the patient to raise awareness and understanding of a disease. Kyle Brown explains how this works in practice using the example of muscular dystrophy and blood cancer in Latin America. He also explains that they share data with universities, pharmaceutical companies and advocacy groups in order to advance treatment. To protect patient data, the work closely with Institutional Review Boards (IRBs) and they get informed consent from patients. Further, he discusses their collaboration with ABRALE, which represents thalassemia, chronic myeloid leukemia (CML) and acute myeloid leukemia (AML) patients, and other patient organizations in Latin America. Recorded at the 2016 American Society of Hematology (ASH) Annual Meeting, held in San Diego, CA.