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25 anni fa moriva Madre Teresa: Calcutta si prepara a celebrare la santaCon AIVA volontariato dedicato alle Vasculiti ANCA-Associate di Askanews   30-07-2024 - 13:52 Link copiato Loading... 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background-color: #fff; border-radius: 0.5rem; box-shadow: 0 12px 24px rgba(0, 0, 0, 0.12); font-family: sans-serif; content: 'Loading...'; display: flex !important; font-size: 13px; font-weight: bold; line-height: 1; justify-content: center; min-height: 50px; text-transform: uppercase;}#speakup-player:empty{ display: block;} Roma, 30 lug. (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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