Notizie di Cronaca in tempo reale - Pag. 424

Mestre, trovato un cadavere in un canale di Punta San GiulianoDa gita domenicale a tragedia: Emiliano Serafini morto in un incidente stradaleSalerno, uomo colpito da un malore in pieno centro: soccorso

Marito la picchia, lei ne parla con un vigile conosciuto su Facebook il quale la salvaMalattie rare,Professore del Dipartimento di Gestione del Rischio di BlackRock Ucb conferma impegno per miastenia gravis e sindrome di Dravet di Adnkronos   04-07-2024 - 14:43 Link copiato #iubenda-cs-banner .iub_ts_bc:not(.iubenda-custom-content) *,#iubenda-cs-banner [class*=" iub"],#iubenda-cs-banner [class^=iub],.iubenda-tp-btn:not([data-tp-nostyle]){ 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(Adnkronos Salute) - Il mese di giugno, appena trascorso, è stato particolarmente ricco di iniziative dedicate ad alcune patologie rare che interessano principalmente il sistema nervoso centrale: il 2 giugno si è celebrata infatti la Giornata mondiale della miastenia gravis e il 23 quella della sindrome di Dravet. Sono malattie per le quali, negli ultimi anni, Ucb Pharma sta rivolgendo il proprio impegno, mettendo sempre al centro i pazienti e le loro testimonianze, e continuando a investire in innovazioni terapeutiche che abbiano un impatto positivo sulle loro vite. Per celebrare al meglio le due giornate mondiali - si legge in una nota - il 24 giugno l'azienda farmaceutica belga ha organizzato, presso i propri uffici di Milano, l'evento 'Alleviamo la fatica e lasciamo il segno', dedicato ai dipendenti con l'obiettivo di aumentare la consapevolezza sulle patologie, dando voce a chi vive con queste malattie rare attraverso il coinvolgimento diretto delle associazioni dei pazienti con video testimonianze di caregiver e pazienti, offrendo ai partecipanti una visione reale e toccante della quotidianità di queste persone. All'iniziativa hanno partecipato Isabella Brambilla, presidente dell'Associazione Dravet Italia, e Roberta Annunziata, dell'associazione Aim Campania. A seguito di queste testimonianze, è stato organizzato un workshop creativo e simbolico durante il quale i partecipanti hanno personalizzato delle magliette bianche su cui sono state scritte, sul retro, parole rappresentative del dolore e della fatica dei pazienti, trasferendone simbolicamente il peso sulle spalle. Sul fronte, hanno decorato le magliette con stencil a forma di zebra e unicorno, simboli legati alle due patologie, lasciando un segno tangibile del loro supporto e solidarietà.La miastenia gravis (gMG) - ricorda la nota - è una malattia autoimmune rara, cronica, caratterizzata da alterazioni morfologiche e funzionali responsabili del disturbo della trasmissione a livello della giunzione neuromuscolare, con manifestazioni cliniche eterogenee quali ptosi palpebrale (caduta delle palpebre), visione doppia, difficoltà a deglutire, masticare e parlare, oltre a una grave debolezza muscolare che può colpire vari distretti e che, quando coinvolge i muscoli della respirazione, può essere potenzialmente letale. Per questa patologia, lo scorso dicembre Ucb ha ottenuto l'approvazione europea per zilucoplan e nel gennaio 2024 per rozanolixizumab. Il primo è un peptide inibitore della componente 5 della cascata del complemento (inibitore C5), approvato dall'Ue come terapia aggiuntiva a quella standard in pazienti adulti positivi agli anticorpi anti-recettore dell'acetilcolina (AChR). E' l'unico farmaco della sua categoria a possedere un meccanismo d'azione duplice. Rozanolixizumab è un anticorpo monoclonale IgG4 umanizzato, che si lega al recettore Fc neonatale, determinando la riduzione delle IgG circolanti. Il farmaco è approvato come terapia add-on alla standard in pazienti adulti positivi agli anticorpi AChR o anti-tirosinchinasi muscolo-specifica (MuSK). La farmaceutica belga è quindi la prima e unica a possedere un portafoglio focalizzato sulla gMG, in grado di offrire terapie mirate sia agli anticorpi anti-AChR che a quelli anti-MuSK. Nel mese di maggio di quest'anno il 'Journal of Neurology' ha pubblicato i dati di un'analisi post hoc dello studio registrativo di fase 3 Raise e dello studio di estensione in aperto (Ole) Raise-XT, attualmente ancora in corso, che valuta l'effetto a lungo termine di zilucoplan sulla fatica, in pazienti adulti con gMG da moderata a grave, positivi agli anticorpi anti-recettore dell’acetilcolina (AChR-Ab+).La sindrome di Dravet - prosegue la nota - è una encefalopatia epilettica che inizia nell'infanzia ed è caratterizzata da convulsioni difficilmente trattabili con farmaci anti-crisi, disturbi cognitivi, comportamentali e motori, che persistono fino all'età adulta. Per questa grave patologia, Ucb ha acquisito da Zogenix un farmaco presente da circa 2 anni sul mercato italiano (fenfluramina), che ha dimostrato una riduzione significativa dal punto di vista statistico e clinico della frequenza delle crisi convulsive. Nel corso del recente Congresso internazionale di neurologia infantile (Icnc), l'azienda ha presentato i risultati finali dello studio di estensione in aperto a 3 anni (Ole) relativo a fenfluramina, che hanno dimostrato l'efficacia a lungo termine del farmaco come terapia add-on in pazienti di età compresa tra 2 e 32 anni. Le ulteriori valutazioni dei caregiver, secondo la Clinical Global Impression Scale, integrando i dati sulla riduzione del numero delle crisi, forniscono un endpoint di efficacia positivo. Tali risultati rafforzano il potenziale del trattamento a lungo termine e l'efficacia di fenfluramina fino a 3 anni, mostrando riduzioni significative e durature della frequenza mensile mediana delle crisi convulsive nelle persone affette dalla sindrome di Dravet, che rappresentano i principali obiettivi per il paziente, aiutandolo a raggiungere il massimo potenziale dello sviluppo e della qualità della vita. "Alla base del nostro impegno nelle malattie rare - afferma Federico Chinni, amministratore delegato di Ucb Pharma Italia - c'è la consapevolezza che molte di queste, spesso, sono patologie 'orfane', di interesse limitato per ricercatori e medici, per le quali non è disponibile una terapia. Scegliere di intraprendere questo percorso per Ucb ha significato impegnarsi con coraggio e responsabilità, per fare la differenza nella vita dei pazienti con patologie ancora poco conosciute e non idoneamente trattate. Il nostro obiettivo - conclude - è quello di trasformare la vita di ogni singola persona con una malattia rara, sviluppando farmaci innovativi, migliorando la diagnostica ed esplorando nuovi approcci al trattamento". di Adnkronos   04-07-2024 - 14:43 Link copiato Commenti Leggi la Netiquette

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