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27° Meeting Scientifico online ISS e UNIAMO

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Le esperienze delle Associazioni dei pazienti durante la pandemia

Dopo il successo dell’edizione precedente, saranno 6 le Associazioni protagoniste del prossimo webinar promosso dall’Istituto Superiore di Sanità e Uniamo.
L’incontro di giovedì 17 giugno sarà un’occasione di confronto sulle esperienze e le buone pratiche maturate dall’inizio delle pandemia ad oggi.
Una panoramica delle difficoltà riscontrate ma anche e soprattutto di progetti concreti a sostegno delle persone con malattia rara.

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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