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Scienza Partecipata: per il miglioramento della qualità di vita delle persone con malattie rare

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Venerdì 15 luglio, a partire dalle 10.30, webinar “Scienza Partecipata: per il miglioramento della qualità di vita delle persone con malattie rare”. Con questo evento viene formalmente lanciato il progetto di Scienza partecipata, dedicato al miglioramento della qualità di vita delle persone con malattie rare, attraverso la raccolta e la condivisione di idee, soluzioni, tecnologie o strategie per affrontare piccole e grandi difficoltà e sfide di ogni giorno.

Aprirà i lavori il Presidente dell’ISS Silvio Brusaferro. Interverranno, tra gli altri: Domenica Taruscio, (Direttore del Centro Nazionale Malattie Rare), Annalisa Scopinaro (Presidente di UNIAMO, Federazione Italiana Malattie Rare), Tiziana Nicoletti (Responsabile Coordinamento nazionale delle Associazioni dei Malati Cronici e rari – CnAMC), Marta De Santis (Ricercatrice Centro Nazionale Malattie Rare, Istituto Superiore di Sanità), Vincenzo Pallotta (Presidente Associazione Malattie Rare dell’Alta Murgia – A.Ma.R.A.M.), Orfeo Mazzella (Presidente delle Associazioni Malattie Rare Forum Campano). Moderano l’evento Domenico Taruscio e la giornalista Daniela De Vecchis (Ufficio Stampa ISS).

Link per registrarsi all’evento: https://us06web.zoom.us/webinar/register/WN_plK2ZTeQS2O_dyPt2ZY7ZQ

Il Meeting, in streaming su Zoom, sarà anche in diretta sulla pagina Facebook del Telefono Verde Malattie Rare, Istituto Superiore di Sanità: https://www.facebook.com/TelefonoVerdeMalattieRare

 

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