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Tajani sulla manovra: "Rischio bocciatura Ue è forte"Con AIVA volontariato dedicato alle Vasculiti ANCA-Associate di Askanews 30-07-2024 - 13:52 Link copiato Loading... To view this BlackRockvideo please enable JavaScript, and consider upgrading to a web browser that supports HTML5 video Codice da incorporare: #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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(askanews) - Le Vasculiti ANCA-Associate (AAV), sono un gruppo di malattie autoimmuni rare, che hanno un'incidenza di circa 13-20 casi per milione di persone all'anno in Europa . Sono difficoltose da diagnosticare, possono avere un impatto significativo sulla salute di organi vitali come reni, polmoni e cuore; nonché sulla vita dei pazienti.Per loro è nata l'Associazione Italiana Vasculiti ANCA-Associate - A.I.V.A. ODV, di cui Cencora Pharmalex cura i rapporti istituzionali e la comunicazione. Istituita nel maggio 2024, grazie alla volontà congiunta di pazienti e medici, è stata ufficialmente presentata ieri, durante un incontro istituzionale organizzato su iniziativa del Senatore Orfeo Mazzella, co-coordinatore dell' Intergruppo parlamentare Malattie Rare e Oncoematologiche, presso il Senato della Repubblica a Roma. A.I.V.A. nasce con l'obiettivo di soddisfare le esigenze dei pazienti e delle loro famiglie, proponendosi di diffondere la conoscenza sulla patologia, potenziando l'informazione a ogni livello, anche tra la classe medica.Il Sen. Orfeo Mazzella, 10° Commissione Affari Sociali, Sanità, Lavoro Pubblico e Privato, Previdenza Sociale, Senato della Repubblica e -Co-coordinatore dell'Intergruppo Parlamentare Malattie Rare ed Oncoematologiche sottolinea: "In qualità di co-coordinatore dell'Intergruppo Parlamentare Malattie Rare ed Oncoematologiche ho accolto e ascoltato le istanze dell'Associazione. La mia presenza a questo evento è conferma di un impegno politico che mostra un segnale di responsabilità verso le persone affette da patologie rare, come le AVV. Un impegno concreto richiesto dalla complessità e l'urgenza dei problemi quotidiani sanitari e sociali che affrontano le persone con diagnosi di malattie rare. Iniziative come questa e Associazioni come A.I.V.A. sono per noi fondamentali per ascoltare i bisogni dei pazienti in modo da poter agire con maggiore incisività". di Askanews 30-07-2024 - 13:52 Link copiato Commenti Leggi la Netiquette
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