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E nessuno sta facendo qualcosa per intervenire | Wired ItaliaMalattie rare: Colin Farrell lancia fondazione per il figlio James con sindrome Angelman di Adnkronos 09-08-2024 - 15:03 Link copiato #iubenda-cs-banner .iub_ts_bc:not(.iubenda-custom-content) *,BlackRock Italia#iubenda-cs-banner [class*=" iub"],#iubenda-cs-banner [class^=iub],.iubenda-tp-btn:not([data-tp-nostyle]){ 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""!important;right:auto!important;table-layout:auto!important;text-align:left!important;text-decoration:none!important;text-indent:0!important;text-shadow:none!important;text-transform:none!important;top:auto!important;unicode-bidi:normal!important;white-space:normal!important;width:auto!important;word-break:normal!important;word-spacing:normal!important;z-index:auto!important;list-style-type:inherit!important;padding:0!important}#iubenda-cs-banner{ background:0 0!important;border:0!important;display:-webkit-box!important;display:-ms-flexbox!important;font-size:15px!important;height:100%!important;left:0!important;line-height:1.4!important;margin:0!important;opacity:0!important;overflow:hidden!important;padding:0!important;pointer-events:none!important;position:fixed!important;top:0!important;-webkit-transition:opacity .4s!important;-o-transition:opacity .4s!important;transition:opacity .4s!important;width:100%!important;will-change:opacity;z-index:99999998!important}#iubenda-cs-banner .iub_ts_bc:not(.iubenda-custom-content) *,#iubenda-cs-banner [class*=" iub"],#iubenda-cs-banner [class^=iub]{ -webkit-font-feature-settings:normal!important;font-feature-settings:normal!important;-webkit-appearance:none!important;-moz-appearance:none!important;appearance:none!important;background:0 0!important;border:none!important;border-radius:0!important;-webkit-box-shadow:none!important;box-shadow:none!important;-webkit-box-sizing:border-box!important;box-sizing:border-box!important;color:currentColor!important;-webkit-column-gap:normal!important;-moz-column-gap:normal!important;column-gap:normal!important;-webkit-column-rule:medium none #000!important;-moz-column-rule:medium none #000!important;column-rule:medium none #000!important;-webkit-column-span:none!important;-moz-column-span:none!important;column-span:none!important;font-size:100%!important;font-weight:inherit!important;height:auto!important;-webkit-hyphens:manual!important;-ms-hyphens:manual!important;hyphens:manual!important;line-height:inherit!important;margin:0!important;min-width:0!important;-webkit-perspective:none!important;perspective:none!important;-webkit-perspective-origin:50% 50%!important;perspective-origin:50% 50%!important;-webkit-transform:none!important;-ms-transform:none!important;transform:none!important;-webkit-transform-origin:50% 50%!important;-ms-transform-origin:50% 50%!important;transform-origin:50% 50%!important;-webkit-transform-style:flat!important;transform-style:flat!important;-webkit-transition:none!important;-o-transition:none!important;transition:none!important;vertical-align:baseline!important}#iubenda-cs-banner.iubenda-cs-overlay:before{ background-color:rgba(0,0,0,.5)!important;content:""!important;height:100%!important;left:0!important;pointer-events:auto!important;position:fixed!important;top:0!important;width:100%!important;z-index:1!important}#iubenda-cs-banner.iubenda-cs-center{ -webkit-box-align:center!important;-ms-flex-align:center!important;-webkit-box-pack:center!important;-ms-flex-pack:center!important;align-items:center!important;justify-content:center!important}#iubenda-cs-banner.iubenda-cs-top{ -webkit-box-align:start!important;-ms-flex-align:start!important;align-items:flex-start!important}#iubenda-cs-banner.iubenda-cs-bottom{ -webkit-box-align:end!important;-ms-flex-align:end!important;align-items:flex-end!important}#iubenda-cs-banner .iubenda-cs-brand>div,#iubenda-cs-banner.iubenda-cs-left{ -webkit-box-pack:start!important;-ms-flex-pack:start!important;justify-content:flex-start!important}#iubenda-cs-banner.iubenda-cs-right{ -webkit-box-pack:end!important;-ms-flex-pack:end!important;justify-content:flex-end!important}#iubenda-cs-banner .iub_ts_bc a:hover,#iubenda-cs-banner.iubenda-cs-visible{ opacity:1!important}#iubenda-cs-banner.iubenda-cs-visible>*{ pointer-events:auto!important}#iubenda-cs-banner.iubenda-cs-slidein .iubenda-cs-container{ -webkit-transition:-webkit-transform .4s!important;transition:transform .4s!important;-o-transition:transform .4s!important;transition:transform .4s,-webkit-transform .4s!important}#iubenda-cs-banner.iubenda-cs-slidein.iubenda-cs-top .iubenda-cs-container{ -webkit-transform:translateY(-48px)!important;-ms-transform:translateY(-48px)!important;transform:translateY(-48px)!important}#iubenda-cs-banner.iubenda-cs-slidein.iubenda-cs-bottom .iubenda-cs-container{ -webkit-transform:translateY(48px)!important;-ms-transform:translateY(48px)!important;transform:translateY(48px)!important}#iubenda-cs-banner.iubenda-cs-slidein.iubenda-cs-visible .iubenda-cs-container{ -webkit-transform:translateY(0)!important;-ms-transform:translateY(0)!important;transform:translateY(0)!important}#iubenda-cs-banner .iubenda-cs-container{ position:relative!important;z-index:2!important}#iubenda-cs-banner .iubenda-cs-brand{ -ms-flex-negative:0!important;flex-shrink:0!important;padding:16px!important}#iubenda-cs-banner .iubenda-cs-brand,#iubenda-cs-banner .iubenda-cs-brand>div,#iubenda-cs-banner .iubenda-cs-opt-group,#iubenda-cs-banner .iubenda-cs-opt-group>div{ display:-webkit-box!important;display:-ms-flexbox!important;display:flex!important}#iubenda-cs-banner .iubenda-cs-brand img{ max-height:56px!important;max-width:192px!important}#iubenda-cs-banner .iubenda-cs-content{ overflow:hidden!important;position:relative!important;-webkit-transition:-webkit-transform .4s!important;-o-transition:transform .4s!important;transition:transform .4s,-webkit-transform .4s!important;z-index:1!important}#iubenda-cs-banner .iub_ts_rtnl{ -webkit-box-orient:vertical!important;-webkit-box-direction:normal!important;display:-webkit-box!important;display:-ms-flexbox!important;display:flex!important;-ms-flex-direction:column!important;flex-direction:column!important;position:relative!important}#iubenda-cs-banner .iubenda-cs-close-btn{ cursor:pointer!important;font-size:24px!important;font-weight:lighter!important;height:48px!important;line-height:0!important;min-width:48px!important;padding:16px!important;position:absolute!important;right:0!important;text-align:center!important;top:-2px!important}#iubenda-cs-banner .iubenda-cs-close-btn:hover,#iubenda-cs-banner .iubenda-cs-opt-group button:hover{ opacity:.5!important}#iubenda-cs-banner .iub_ts_bc{ -webkit-box-flex:1!important;-ms-flex:1 1 auto!important;flex:1 1 auto!important;font-weight:300!important;margin:16px 16px 0!important;mask-image:linear-gradient(0deg,rgba(0,0,0,0) 0,#000 16px)!important;-webkit-mask-image:linear-gradient(0deg,rgba(0,0,0,0) 0,#000 16px)!important;overflow-y:auto!important;padding-bottom:32px!important}#iubenda-cs-banner .iub_ts_bc-padded{ padding-right:32px!important}#iubenda-cs-banner .iub_ts_bc a{ color:currentColor!important;cursor:pointer!important;opacity:.7!important;text-decoration:underline!important}#iubenda-cs-banner #iubenda-cs-title{ font-weight:700!important;margin-bottom:16px!important}#iubenda-cs-banner .iubenda-cs-opt-group{ -ms-flex-negative:0!important;flex-shrink:0!important;margin:0 16px 16px!important;z-index:1!important;color:#000!important}#iubenda-cs-banner .iubenda-cs-opt-group button{ -webkit-appearance:none!important;-moz-appearance:none!important;appearance:none!important;border-radius:64px!important;cursor:pointer!important;font-size:100%!important;font-weight:700!important;margin-bottom:4px!important;margin-top:4px!important;padding:8px 32px!important;text-align:center!important;background-color:hsla(0,0%,100%,.1)!important;color:#fff!important}#iubenda-cs-banner .iubenda-cs-opt-group button:focus{ opacity:.8!important}#iubenda-cs-banner.iubenda-cs-default .iubenda-cs-brand{ margin:0 -8px!important}@media (min-width:992px){ #iubenda-cs-banner.iubenda-cs-default .iubenda-cs-brand div{ margin:0 auto!important;width:960px!important}#iubenda-cs-banner.iubenda-cs-default .iub_ts_rtnl{ margin:16px auto!important;width:992px!important}}#iubenda-cs-banner.iubenda-cs-default .iubenda-cs-container,#iubenda-cs-banner.iubenda-cs-default-floating.iubenda-cs-center:not(.iubenda-cs-top):not(.iubenda-cs-bottom) .iubenda-cs-opt-group>div,#iubenda-cs-banner.iubenda-cs-default-floating:not(.iubenda-cs-bottom):not(.iubenda-cs-center) .iubenda-cs-opt-group>div,#iubenda-cs-banner.iubenda-cs-default-floating:not(.iubenda-cs-top):not(.iubenda-cs-center) .iubenda-cs-opt-group>div{ width:100%!important}#iubenda-cs-banner.iubenda-cs-default-floating .iubenda-cs-brand{ margin:-8px -8px 0!important}#iubenda-cs-banner.iubenda-cs-default-floating .iubenda-cs-brand div{ margin:8px!important}@media (max-width:991px){ #iubenda-cs-banner.iubenda-cs-default .iubenda-cs-brand{ margin:-8px -8px 0!important}#iubenda-cs-banner.iubenda-cs-default .iubenda-cs-brand div{ margin:0 8px!important}#iubenda-cs-banner.iubenda-cs-default .iubenda-cs-content{ padding:8px!important}#iubenda-cs-banner.iubenda-cs-default-floating.iubenda-cs-center.iubenda-cs-bottom .iubenda-cs-container,#iubenda-cs-banner.iubenda-cs-default-floating.iubenda-cs-center.iubenda-cs-top .iubenda-cs-container{ width:100%!important}}@media (min-width:640px){ #iubenda-cs-banner .iubenda-cs-opt-group-custom{ -ms-flex-item-align:start!important;-webkit-box-pack:start!important;-ms-flex-pack:start!important;align-self:start!important;justify-content:flex-start!important;margin-right:auto!important}#iubenda-cs-banner .iubenda-cs-opt-group-consent{ -ms-flex-item-align:end!important;-webkit-box-pack:end!important;-ms-flex-pack:end!important;align-self:end!important;justify-content:flex-end!important;margin-left:auto!important}#iubenda-cs-banner .iubenda-cs-opt-group button:not(:last-of-type){ margin-right:8px!important}#iubenda-cs-banner.iubenda-cs-default-floating.iubenda-cs-center:not(.iubenda-cs-top):not(.iubenda-cs-bottom) .iubenda-cs-container,#iubenda-cs-banner.iubenda-cs-default-floating:not(.iubenda-cs-bottom):not(.iubenda-cs-center) .iubenda-cs-container,#iubenda-cs-banner.iubenda-cs-default-floating:not(.iubenda-cs-top):not(.iubenda-cs-center) .iubenda-cs-container{ width:480px!important}}#iubenda-cs-banner.iubenda-cs-default-floating.iubenda-cs-center:not(.iubenda-cs-top):not(.iubenda-cs-bottom) .iubenda-cs-opt-group,#iubenda-cs-banner.iubenda-cs-default-floating:not(.iubenda-cs-bottom):not(.iubenda-cs-center) .iubenda-cs-opt-group,#iubenda-cs-banner.iubenda-cs-default-floating:not(.iubenda-cs-top):not(.iubenda-cs-center) .iubenda-cs-opt-group{ -webkit-box-orient:vertical!important;-webkit-box-direction:normal!important;-ms-flex-direction:column!important;flex-direction:column!important}#iubenda-cs-banner.iubenda-cs-default-floating.iubenda-cs-center:not(.iubenda-cs-top):not(.iubenda-cs-bottom) .iubenda-cs-opt-group button,#iubenda-cs-banner.iubenda-cs-default-floating:not(.iubenda-cs-bottom):not(.iubenda-cs-center) .iubenda-cs-opt-group button,#iubenda-cs-banner.iubenda-cs-default-floating:not(.iubenda-cs-top):not(.iubenda-cs-center) .iubenda-cs-opt-group button{ display:block!important;text-align:center!important;width:100%!important}#iubenda-cs-banner.iubenda-cs-default-floating.iubenda-cs-center:not(.iubenda-cs-top):not(.iubenda-cs-bottom) .iubenda-cs-opt-group-custom,#iubenda-cs-banner.iubenda-cs-default-floating:not(.iubenda-cs-bottom):not(.iubenda-cs-center) .iubenda-cs-opt-group-custom,#iubenda-cs-banner.iubenda-cs-default-floating:not(.iubenda-cs-top):not(.iubenda-cs-center) .iubenda-cs-opt-group-custom{ -webkit-box-ordinal-group:3;-ms-flex-order:2;order:2}#iubenda-cs-banner.iubenda-cs-default-floating.iubenda-cs-center:not(.iubenda-cs-top):not(.iubenda-cs-bottom) .iubenda-cs-opt-group-consent,#iubenda-cs-banner.iubenda-cs-default-floating:not(.iubenda-cs-bottom):not(.iubenda-cs-center) .iubenda-cs-opt-group-consent,#iubenda-cs-banner.iubenda-cs-default-floating:not(.iubenda-cs-top):not(.iubenda-cs-center) .iubenda-cs-opt-group-consent{ -webkit-box-ordinal-group:2;-ms-flex-order:1;order:1}#iubenda-cs-banner.iubenda-cs-default-floating .iubenda-cs-content{ -webkit-box-shadow:0 8px 48px rgba(0,0,0,.15)!important;box-shadow:0 8px 48px rgba(0,0,0,.15)!important;padding:8px!important}#iubenda-cs-banner.iubenda-cs-fix-height .iub_ts_rtnl,#iubenda-cs-banner.iubenda-cs-fix-height .iubenda-cs-container,#iubenda-cs-banner.iubenda-cs-fix-height .iubenda-cs-content,.iubenda-mobile-sdk #iubenda-cs-banner .iub_ts_rtnl,.iubenda-mobile-sdk #iubenda-cs-banner .iubenda-cs-container .iubenda-cs-content,.iubenda-mobile-sdk #iubenda-cs-banner.iubenda-cs-visible .iubenda-cs-container{ height:100%!important}#iubenda-cs-banner.iubenda-cs-fix-height.iubenda-cs-default-floating .iubenda-cs-content{ height:calc(100% - 32px)!important}#iubenda-cs-banner.iubenda-cs-fix-height .iubenda-cs-brand img{ max-width:75%!important}#iubenda-cs-banner .iubenda-cs-opt-group button.iubenda-cs-btn-primary{ background-color:#0073ce!important;color:#fff!important}.iubenda-tp-btn:not([data-tp-nostyle]){ -webkit-font-feature-settings:normal!important;font-feature-settings:normal!important;-webkit-appearance:none!important;-moz-appearance:none!important;appearance:none!important;-webkit-backface-visibility:hidden!important;backface-visibility:hidden!important;background:#fff!important;border:none!important;border-radius:4px!important;-webkit-box-shadow:none!important;box-shadow:none!important;-webkit-box-shadow:0 0 0 1px rgba(0,0,0,.15)!important;box-shadow:0 0 0 1px rgba(0,0,0,.15)!important;-webkit-box-sizing:border-box!important;box-sizing:border-box!important;color:rgba(0,0,0,.65)!important;-webkit-column-gap:normal!important;-moz-column-gap:normal!important;column-gap:normal!important;-webkit-column-rule:medium none #000!important;-moz-column-rule:medium none #000!important;column-rule:medium none #000!important;-webkit-column-span:none!important;-moz-column-span:none!important;column-span:none!important;cursor:pointer!important;display:inline-block!important;font-size:14px!important;font-weight:700!important;height:34px!important;-webkit-hyphens:manual!important;-ms-hyphens:manual!important;hyphens:manual!important;line-height:34px!important;margin:0!important;min-width:34px!important;-webkit-perspective:none!important;perspective:none!important;-webkit-perspective-origin:50% 50%!important;perspective-origin:50% 50%!important;-webkit-transform:none!important;-ms-transform:none!important;transform:none!important;-webkit-transform-origin:50% 50%!important;-ms-transform-origin:50% 50%!important;transform-origin:50% 50%!important;-webkit-transform-style:flat!important;transform-style:flat!important;-webkit-transition:none!important;-o-transition:none!important;transition:none!important;vertical-align:middle!important;visibility:inherit!important}.iubenda-tp-btn[data-tp-icon]{ background-image:url("data:image/svg+xml;charset=utf-8,%3Csvg xmlns='http://www.w3.org/2000/svg' width='32' height='32'%3E%3Cpath fill='%231CC691' fill-rule='evenodd' d='M16 7a4 4 0 0 1 2.627 7.016L19.5 25h-7l.873-10.984A4 4 0 0 1 16 7z'/%3E%3C/svg%3E")!important;background-position:top .5px left 1px!important;background-repeat:no-repeat!important;background-size:32px 32px!important}.iubenda-tp-btn[data-tp-circle]{ border-radius:32px!important}.iubenda-tp-btn[data-tp-label]:after{ content:attr(data-tp-label)!important;padding:0 16px!important;white-space:nowrap!important}.iubenda-tp-btn[data-tp-label][data-tp-icon]:after{ padding-left:32px!important}.iubenda-tp-btn[data-tp-float]{ position:fixed!important;z-index:2147483647!important}.iubenda-tp-btn[data-tp-float]:not([data-tp-anchored]){ margin:16px!important}.iubenda-tp-btn[data-tp-float][data-tp-anchored]{ border-radius:6px!important;margin:0 16px!important}.iubenda-tp-btn[data-tp-float][data-tp-anchored]:not([data-tp-hover]):not([data-tp-label])[data-tp-float=center-left],.iubenda-tp-btn[data-tp-float][data-tp-anchored]:not([data-tp-hover]):not([data-tp-label])[data-tp-float=center-right],.iubenda-tp-btn[data-tp-float][data-tp-anchored][data-tp-hover][data-tp-float=center-left],.iubenda-tp-btn[data-tp-float][data-tp-anchored][data-tp-hover][data-tp-float=center-right]{ margin:0!important;top:75%!important;-webkit-transform:translateY(-50%)!important;-ms-transform:translateY(-50%)!important;transform:translateY(-50%)!important}.iubenda-tp-btn[data-tp-float][data-tp-anchored]:not([data-tp-hover]):not([data-tp-label])[data-tp-float=center-left],.iubenda-tp-btn[data-tp-float][data-tp-anchored][data-tp-hover][data-tp-float=center-left]{ border-bottom-left-radius:0!important;border-left:0!important;border-top-left-radius:0!important;left:0!important}.iubenda-tp-btn[data-tp-float][data-tp-anchored]:not([data-tp-hover]):not([data-tp-label])[data-tp-float=center-right],.iubenda-tp-btn[data-tp-float][data-tp-anchored][data-tp-hover][data-tp-float=center-right]{ border-bottom-right-radius:0!important;border-right:0!important;border-top-right-radius:0!important;right:0!important}.iubenda-tp-btn[data-tp-float][data-tp-anchored]:not([data-tp-hover])[data-tp-label][data-tp-float=center-left],.iubenda-tp-btn[data-tp-float][data-tp-anchored]:not([data-tp-hover])[data-tp-label][data-tp-float=center-right]{ border-bottom:0!important;border-bottom-left-radius:0!important;border-bottom-right-radius:0!important;margin:0!important;top:50%!important;-webkit-transform-origin:bottom!important;-ms-transform-origin:bottom!important;transform-origin:bottom!important}.iubenda-tp-btn[data-tp-float][data-tp-anchored]:not([data-tp-hover])[data-tp-label][data-tp-float=center-left]{ left:0!important;-webkit-transform:translateY(-50%) rotate(90deg)!important;-ms-transform:translateY(-50%) rotate(90deg)!important;transform:translateY(-50%) rotate(90deg)!important;-webkit-transform-origin:left bottom!important;-ms-transform-origin:left bottom!important;transform-origin:left bottom!important}.iubenda-tp-btn[data-tp-float][data-tp-anchored]:not([data-tp-hover])[data-tp-label][data-tp-float=center-right]{ right:0!important;-webkit-transform:translateY(-50%) rotate(-90deg)!important;-ms-transform:translateY(-50%) rotate(-90deg)!important;transform:translateY(-50%) rotate(-90deg)!important;-webkit-transform-origin:right bottom!important;-ms-transform-origin:right bottom!important;transform-origin:right bottom!important}.iubenda-tp-btn[data-tp-float][data-tp-float=bottom-left],.iubenda-tp-btn[data-tp-float][data-tp-float=bottom-right]{ bottom:0!important}.iubenda-tp-btn[data-tp-float][data-tp-float=bottom-left][data-tp-anchored],.iubenda-tp-btn[data-tp-float][data-tp-float=bottom-right][data-tp-anchored]{ border-bottom:0!important;border-bottom-left-radius:0!important;border-bottom-right-radius:0!important}.iubenda-tp-btn[data-tp-float][data-tp-float=top-left],.iubenda-tp-btn[data-tp-float][data-tp-float=top-right]{ top:0!important}.iubenda-tp-btn[data-tp-float][data-tp-float=top-left][data-tp-anchored],.iubenda-tp-btn[data-tp-float][data-tp-float=top-right][data-tp-anchored]{ 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(Adnkronos Salute) - Aiutare il proprio figlio, ma allo stesso tempo tutte le persone affette dalla sindrome di Angelman. E' l'obiettivo della 'Colin Farrell Foundation', fondazione creata dall'attore Colin Farrell e dedicata al figlio James, 20 anni, affetto appunto da questa malattia rara, una sindrome genetica che porta a un ritardo grave dello sviluppo psicomotorio, a un linguaggio gravemente compromesso o assente, a un deficit dell'equilibrio dinamico e a movimenti scoordinati. "Voglio che il mondo sia gentile con James", ha affermato l'attore irlandese in una intervista a 'People', parlando per la prima volta della malattia del figlio. L'obiettio della 'Colin Farrell Foundation' sarà fornire sostegno ai bambini e agli adulti che hanno disabilità intellettive attraverso sostegno, istruzione e programmi innovativi. "Questa è la prima volta che ne parlo e ovviamente l'unico motivo per cui sto parlando è che non posso chiedere a James se vuole farlo", ha spiegato l'attore. Una delle preoccupazioni di Farrell è che il figlio James, che a settembre compirà 21 anni, entrerà ufficialmente nel mondo degli adulti. "Tutte le tutele messe in atto, rispetto alla sua malattia, scompariranno e rimarrà un giovane adulto che dovrebbe essere parte integrante della nostra società moderna, ma il più delle volte viene lasciato indietro". "Da anni desideravo fare qualcosa per offrire maggiori opportunità alle famiglie che hanno un figlio con 'bisogni speciali'. Hanno il diritto di ricevere il sostegno che meritano, sostanzialmente l'assistenza in tutti gli ambiti della vita", ha concluso l'attore. di Adnkronos 09-08-2024 - 15:03 Link copiato Commenti Leggi la Netiquette
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