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“Famigli-abile” Diritti, bisogni e aspirazioni

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22 ottobre 2017
Guido Reni District, Via Guido Reni 7 – Roma

Negli ultimi anni si moltiplicano le iniziative e i progetti per rimettere al centro del percorso di cura e assistenza la persona con disabilità in tutta la sua complessità. L’obiettivo è quello di raggiungere una visione completa dei bisogni assistenziali del paziente e garantirgli la migliore qualità di vita possibile. Tuttavia, è fondamentale tener presente che la disabilità è una questione che riguarda inevitabilmente tutto il sistema familiare della persona con condizione cronica/invalidante.
Dopo la comunicazione di una diagnosi di malattia complessa e/o una condizione invalidante, infatti, tutta la famiglia è chiamata a riorganizzarsi in un nuovo possibile equilibrio, spesso non facile da trovare. Per questo motivo non è possibile occuparsi adeguatamente della persona con disabilità indipendentemente dalla sua famiglia o dal contesto relazionale in cui è inserita. La famiglia infatti, fornisce un valore aggiunto inestimabile sia in termini di cura che di sostenibilità del nostro sistema sanitario.
Il convegno, promosso dal Centro Nazionale Malattie Rare-Istituto Superiore di Sanità, in collaborazione con As.Ma.Ra. Onlus, intende appunto porre l’attenzione sui diritti della persona con disabilità, ma anche sui bisogni e i diritti e le aspirazioni di chi se ne prende cura (caregiver familiare) e/o di chi ci cresce insieme (siblings).
L’evento sarà occasione per favorire la discussione fra Istituzioni, associazioni e cittadini sullo stato dell’arte, sulle criticità e sulle possibili strategie da intraprendere per garantire una dignitosa qualità di vita e scongiurare qualsiasi violazione dei diritti umani.

SESSIONE 1

Moderatori: D. Taruscio

11:00 I diritti dei caregiver: stato dell’arte – A.M. Comito

11:30 Familiare assistente: alcune iniziative regionali – Rappr. regioni: Campania, Lazio, M.
Colavita- Molise

12:00 “Siblings vuol dire (solo) fratelli e sorelle” – F. Girelli

12:30 L’esperienza del Care Film Festival – V. Raucci

13:00 Discussione

13:20 Intervallo

SESSIONE 2

Moderatori: M.P. Salmi – Medico e giornalista scientifico e D. Taruscio – Centro Nazionale Malattie Rare- Istituto Superiore di Sanità, Roma

14:00 Come stare bene a scuola: norme ed iniziative – M. C. Cipullo – Ministero dell’Istruzione, dell’Università e della Ricerca

14:30 “Come progettare il dopo di noi, durante noi” e Trust in Life – G. De Robertis

15:00 Il ruolo del notaio nel “Dopo di noi”- P. Cabiddu

15:30 Discussione

16:00 Chiusura della giornata

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