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Le esperienze delle Associazioni dei pazienti durante la pandemia
PROGRAMMA
Introduzione e moderatori
Silvio Brusaferro, Presidente dell’Istituto Superiore di Sanità (ISS)
Luigi Bertinato, Segreteria Scientifica del Presidente ISS
Annalisa Scopinaro, Presidente di UNIAMO Federazione Italiana Malattie Rare
Domenica Taruscio, Direttore del Centro Nazionale Malattie Rare, ISS
“I ragazzi del Moscati verso un futuro senza barriere P.E.B.A.” e “Posso prima io?”
Massimo Quaranta, Vite da colorare, Associazione Jonica Malattie Rare e Neurologiche Gravi ONLUS
Esperienze di formazione a distanza…si può fare
Luca Cicchelli, Associazione Persone Sindrome di Williams
Creazione di una comunità solidale di pazienti e professionisti per affrontare l’emergenza
Roberta Giodice, Associazione di famiglie contro l’esofagia eosinifila, ESEO Italia Aps
Il diario della mia terapia – Un percorso di gioco per bambini con patologie metaboliche per un approccio morbido alle terapie infusive
Giuliana Velerio, AISMME, Associazione Italiana Sostegno Malattie Metaboliche Ereditarie Aps
Start & Go: #andràtuttobene
Alessandro Sorce, Associazione Italiana Sindrome di Williams, LAZIO
Diversamente Immobili
Loredana Stincardini, Associazione A.I.D. Kartagener
Discussione e conclusioni
Domenica Taruscio, Direttore del Centro Nazionale Malattie Rare, ISS
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