{"id":32537,"date":"2025-02-17T17:03:30","date_gmt":"2025-02-17T16:03:30","guid":{"rendered":"https:\/\/dupmecp2.eu\/?p=32537"},"modified":"2025-02-17T17:06:48","modified_gmt":"2025-02-17T16:06:48","slug":"ambizioni-2025","status":"publish","type":"post","link":"https:\/\/dupmecp2.eu\/it\/ambizioni-2025\/","title":{"rendered":"Le nostre ambizioni per il 2025"},"content":{"rendered":"<p>Nel 2024, la comunit\u00e0 della sindrome da duplicazione MECP2 ha assistito a tappe fondamentali nella corsa verso una cura, con il lancio non di uno, ma di due studi clinici. Oltre a questi importanti sviluppi, siamo orgogliosi dei progressi compiuti per sostenere le famiglie. Come esempi chiave dei nostri sforzi nel 2024, vorremmo sottolineare in particolare:&nbsp;<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Lo sviluppo di REMEDS, la nostra piattaforma di registro-indagine online per la sindrome da duplicazione MECP2 con sede in Europa. Questa risorsa vitale \u00e8 stata oggetto di un intenso lavoro per tutto il 2024 e sar\u00e0 lanciata a met\u00e0 del 2025, aprendo la strada a una migliore raccolta di dati e alla comprensione della sindrome.&nbsp;<\/li>\n<\/ul>\n\n\n\n<ul class=\"wp-block-list\">\n<li>La produzione di due webinar e di un e-book per aiutare le famiglie a comprendere meglio lo studio ATTUNE e le sue implicazioni.&nbsp;<\/li>\n<\/ul>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Numerosi eventi di beneficenza in Austria volti a sensibilizzare l'opinione pubblica sulla sindrome da duplicazione MECP2.&nbsp;<\/li>\n<\/ul>\n\n\n\n<ul class=\"wp-block-list\">\n<li>L'approvazione del Ministero delle Finanze austriaco, che consente alle donazioni effettuate a partire dal 1\u00b0 gennaio 2024 di essere deducibili dalle tasse.&nbsp;<\/li>\n<\/ul>\n\n\n\n<div style=\"height:20px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p>Il 2024 \u00e8 stato un anno molto emozionante per la nostra comunit\u00e0 e la nostra organizzazione. Tuttavia, siamo consapevoli che il nostro viaggio \u00e8 tutt'altro che finito...&nbsp;<\/p>\n\n\n\n<p>Il vostro sostegno dalla nostra fondazione nell'estate del 2022 \u00e8 stato davvero incredibile e ci d\u00e0 la fiducia necessaria per continuare. Grazie a voi, continuiamo a sostenere, finanziare la ricerca e fornire supporto alle famiglie che affrontano la vita con la sindrome da duplicazione MECP2.&nbsp;<\/p>\n\n\n\n<div style=\"height:20px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p>Guardando al 2025, ci impegniamo a:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Un ponte tra la ricerca accademica e le aziende farmaceutiche per accelerare lo sviluppo terapeutico e migliorare gli strumenti diagnostici.&nbsp;<\/li>\n<\/ul>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Promuovere l'attuazione di studi clinici significativi, ad esempio collaborando con le aziende farmaceutiche e le autorit\u00e0 sanitarie come la FDA o l'EMA.&nbsp;<\/li>\n<\/ul>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Fornire un sostegno finanziario alle famiglie per aiutarle ad accedere a dispositivi medici essenziali e a terapie adatte alle loro esigenze specifiche.&nbsp;<\/li>\n<\/ul>\n\n\n\n<div style=\"height:20px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p><strong>Il nostro lavoro non sarebbe possibile senza il vostro continuo sostegno. Grazie per essere parte del nostro viaggio.&nbsp;<\/strong><\/p>","protected":false},"excerpt":{"rendered":"<p>In 2024, the MECP2 Duplication Syndrome community has witnessed remarkable milestones in the race for a cure with the launch of not one, but two clinical trials. 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