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Shire sostiene la Giornata della malattie rare 2010


News provided by

Shire Pharmaceutical

Mar 01, 2010, 02:15 ET

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CAMBRIDGE, Massachusetts e BASINGSTOKE, Inghilterra, March 1, 2010 /PRNewswire/ -- Shire plc (LSE: SHP, NASDAQ: SHPGY), l'azienda biofarmaceutica specializzata internazionale ha annunciato, in data odierna, che sosterrà attivamente la Giornata della malattie rare in tutto il mondo, garantendo una copertura mediatica in molti paesi per sensibilizzare il pubblico e offrire maggiori informazioni sul tema delle malattie rare.

Commemorata ogni anno l'ultimo giorno di febbraio, la Giornata della malattie rare cerca di richiamare l'attenzione sulle malattie rare, come tematica di sanità pubblica e rafforza la maggiore necessità di avere accesso a informazioni, alla ricerca e ai trattamenti per le malattie rare. L'evento è coordinato a livello internazionale dall'Organizzazione europea per le malattie rare (EURORDIS) e dalla National Organization for Rare Disorders (NORD) negli USA.

Si stima che vi esistano 5.000-8.000 malattie rare note di cui 250 milioni di persone in tutto il mondo sono affette. Shire ha commercialmente autorizzato e reso disponibile delle terapie per la malattia di Fabry, per l'Angioedema ereditario (HAE) e per la sindrome di Hunter. Inoltre Shire è in attesa che la Food & Drug Administration (FDA) statunitense formuli la propria decisione per VPRIVTM (velaglucerasi alfa iniettabile), la terapia enzimatica sostitutiva sperimentale di Shire per la malattia di Gaucher di Tipo 1 a partire dal 28 febbraio.

"Per molti pazienti e le loro famiglie, il viaggio dalla diagnosi al successivo trattamento può rappresentare un processo lungo e complicato", ha affermato Sylvie Grégoire, Presidente di Shire Human Genetic Therapies (HGT). "Shire si impegna ad aiutare le persone affette da condizioni che alterano le loro vite, affinché possano condurre una migliore esistenza - e per noi, questo include migliorare l'accesso alle informazioni e fornire un trattamento terapeutico per le malattie rare."

Le iniziative mondiali di Shire per la Giornata sulle malattie rare:

- Shire sta ampliando BraveCommunity.com (http://www.bravecommunity.com), il proprio centro di risorse on-line il cui obiettivo è mettere in contatto tra di loro i pazienti e fornire informazioni importanti sulle malattie rare.

- Shire sostiene inoltre il Global Genes Project ( http://globalgenesproject.org), un'iniziativa popolare che prevede l'utilizzo dei blue jeans per sensibilizzare l'opinione pubblica internazionale sulle malattie genetiche rare.

- A Washington D.C., Shire sta sostenendo i propri partner no-profit durante la loro visita a Capitol Hill per perorare la causa dei pazienti affetti da malattie rare.

- In Spagna, Shire sta co-sponsorizzando insieme a FEDER (Federazione spagnola per le malattie rare) la Maratona annuale per la Giornata per le malattie rare di Madrid.

- In Brasile, Shire sta organizzando per il 28 febbraio una Marcia speciale di sensibilizzazione sul tema delle malattie rare nel paese. Si prevede la partecipazione all'evento di oltre 20 organizzazioni di pazienti e dei loro membri.

Il comunicato stampa completo è disponibile su : http://www.bravecommunity.com

Media

Jessica Mann (Resto del mondo) +44(0)1256-894-280

Jessica Cotrone (Nord America, HGT) +1-617-613-4640

http://www.shire.com

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