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The debate on rare diseases: a look at media response

  • Autores: Antonio Miguel Bañón Hernández, Josep Solves Almela
  • Localización: Mètode Science Studies Journal: Annual Review, ISSN 2174-3487, ISSN-e 2174-9221, Nº. 6, 2016 (Ejemplar dedicado a: Science grid. The public understanding of science), págs. 208-213
  • Idioma: inglés
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  • Resumen
    • Rare diseases (RDs) are those that affect fewer than five people in every 10,000. There are around 7,000 RDs, they are difficult to diagnose and very few have a treatment. This article explores how the media report on the arguments and counter-arguments regarding the access to drugs for these pathologies, with critical discourse analysis for the case of Duchenne muscular dystrophy. We concluded that, in times of crisis, the debate polarises around economic arguments (the price of drugs), reinforced by doubts about their healing effectiveness.


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