{"id":3864,"date":"2022-09-15T15:29:02","date_gmt":"2022-09-15T14:29:02","guid":{"rendered":"http:\/\/blogs.bellvitgehospital.cat\/aulaela\/?p=3864"},"modified":"2022-09-15T15:29:08","modified_gmt":"2022-09-15T14:29:08","slug":"la-unitat-de-malaltia-de-motoneurona-participa-en-una-sessio-dexperts-en-malalties-minoritaries-del-comite-economic-i-social-europeu","status":"publish","type":"post","link":"http:\/\/blogs.bellvitgehospital.cat\/aulaela\/la-unitat-de-malaltia-de-motoneurona-participa-en-una-sessio-dexperts-en-malalties-minoritaries-del-comite-economic-i-social-europeu\/","title":{"rendered":"La Unitat de Malaltia de Motoneurona participa en una sessi\u00f3 d\u2019experts en malalties minorit\u00e0ries del Comit\u00e8 Econ\u00f2mic i Social Europeu"},"content":{"rendered":"\n<p>La Dra. M\u00f2nica Povedano, cap de la Unitat de Malaltia de Motoneurona del Servei de Neurologia de l\u2019Hospital de Bellvitge, va participar el passat 1 de setembre en una sessi\u00f3 sobre l\u2019abordatge de les malalties minorit\u00e0ries (MM) des de les pol\u00edtiques de la Uni\u00f3 Europea, organitzada pel <a href=\"https:\/\/www.eesc.europa.eu\/en\">Comit\u00e8 Econ\u00f2mic i Social Europeu (EESC, en les seves sigles angleses)<\/a>.<\/p>\n\n\n\n<figure class=\"wp-block-image size-full\"><img loading=\"lazy\" width=\"568\" height=\"164\" src=\"http:\/\/blogs.bellvitgehospital.cat\/aulaela\/wp-content\/uploads\/sites\/2\/2022\/09\/CESE_1.png\" alt=\"\" class=\"wp-image-3865\"\/><\/figure>\n\n\n\n<p>Prop d\u2019una vintena d\u2019experts de diferents disciplines i nacionalitats van participar en les diferents taules de la reuni\u00f3 p\u00fablica virtual, que contribuiran al dictamen que el comit\u00e8 elaborar\u00e0 sobre la iniciativa \u201cGarantir una forta solidaritat europea per als pacients amb malalties minorit\u00e0ries\u201d. L\u2019EESC \u00e9s un \u00f2rgan consultiu del Consell, la Comissi\u00f3 i el Parlament Europeu en els casos previstos pels Tractats. Elabora dict\u00e0mens, que es traslladen al Parlament Europeu, pr\u00e8viament a l&#8217;adopci\u00f3 d&#8217;un gran nombre d&#8217;actes, decisions i normatives que afecten al conjunt de la Uni\u00f3 Europea.<\/p>\n\n\n\n<p>La Dra. Povedano va intervenir en una sessi\u00f3 focalitzada en els criteris de salut en l\u2019abordatge de les malalties minorit\u00e0ries, que va ser moderada pel ministre de Salut de la Rep\u00fablica Txeca, Jakub Dvoracek. Va subratllar que gr\u00e0cies a la recerca al voltant de les MM, cada vegada es coneixen m\u00e9s gens implicats en la seva aparici\u00f3 i desenvolupament, fet que est\u00e0 permetent trobar noves dianes terap\u00e8utiques. Tamb\u00e9 es va referir als problemes que planteja la mancan\u00e7a d\u2019equitat a nivell europeu en l\u2019acc\u00e9s als tractaments, aix\u00ed com la limitaci\u00f3 que suposa el seu preu en molts casos. Per \u00faltim, va destacar que bona part de la c\u00e0rrega econ\u00f2mica en l\u2019atenci\u00f3 de les persones amb una MM recau en les seves fam\u00edlies, donat que s\u00f3n alhora els cuidadors quan aquestes malalties minorit\u00e0ries generen depend\u00e8ncia.<\/p>\n\n\n\n<figure class=\"wp-block-image size-full is-resized\"><img loading=\"lazy\" src=\"http:\/\/blogs.bellvitgehospital.cat\/aulaela\/wp-content\/uploads\/sites\/2\/2022\/09\/WhatsApp-Image-2022-09-14-at-11.16.43.jpeg\" alt=\"\" class=\"wp-image-3866\" width=\"664\" height=\"242\"\/><\/figure>\n<div class=\"sharedaddy sd-sharing-enabled\"><div class=\"robots-nocontent sd-block sd-social sd-social-icon sd-sharing\"><h3 class=\"sd-title\">Comparteix aix\u00f2:<\/h3><div class=\"sd-content\"><ul><li class=\"share-facebook\"><a rel=\"nofollow\" data-shared=\"sharing-facebook-3864\" class=\"share-facebook sd-button share-icon no-text\" href=\"http:\/\/blogs.bellvitgehospital.cat\/aulaela\/la-unitat-de-malaltia-de-motoneurona-participa-en-una-sessio-dexperts-en-malalties-minoritaries-del-comite-economic-i-social-europeu\/?share=facebook\" target=\"_blank\" title=\"Comparteix al Facebook\"><span><\/span><span class=\"sharing-screen-reader-text\">Comparteix al Facebook (Opens in new window)<\/span><\/a><\/li><li class=\"share-twitter\"><a rel=\"nofollow\" data-shared=\"sharing-twitter-3864\" class=\"share-twitter sd-button share-icon no-text\" href=\"http:\/\/blogs.bellvitgehospital.cat\/aulaela\/la-unitat-de-malaltia-de-motoneurona-participa-en-una-sessio-dexperts-en-malalties-minoritaries-del-comite-economic-i-social-europeu\/?share=twitter\" target=\"_blank\" title=\"Feu clic per compartir al Twitter\"><span><\/span><span class=\"sharing-screen-reader-text\">Feu clic per compartir al Twitter (Opens in new window)<\/span><\/a><\/li><li class=\"share-google-plus-1\"><a rel=\"nofollow\" data-shared=\"sharing-google-3864\" class=\"share-google-plus-1 sd-button share-icon no-text\" href=\"http:\/\/blogs.bellvitgehospital.cat\/aulaela\/la-unitat-de-malaltia-de-motoneurona-participa-en-una-sessio-dexperts-en-malalties-minoritaries-del-comite-economic-i-social-europeu\/?share=google-plus-1\" target=\"_blank\" title=\"Feu clic per compartir a Google+\"><span><\/span><span class=\"sharing-screen-reader-text\">Feu clic per compartir a Google+ (Opens in new window)<\/span><\/a><\/li><li class=\"share-email\"><a rel=\"nofollow\" data-shared=\"\" class=\"share-email sd-button share-icon no-text\" href=\"http:\/\/blogs.bellvitgehospital.cat\/aulaela\/la-unitat-de-malaltia-de-motoneurona-participa-en-una-sessio-dexperts-en-malalties-minoritaries-del-comite-economic-i-social-europeu\/?share=email\" target=\"_blank\" title=\"Feu clic per enviar un correu electr\u00f2nic a un amic\"><span><\/span><span class=\"sharing-screen-reader-text\">Feu clic per enviar un correu electr\u00f2nic a un amic (Opens in new window)<\/span><\/a><\/li><li class=\"share-print\"><a rel=\"nofollow\" data-shared=\"\" class=\"share-print sd-button share-icon no-text\" href=\"http:\/\/blogs.bellvitgehospital.cat\/aulaela\/la-unitat-de-malaltia-de-motoneurona-participa-en-una-sessio-dexperts-en-malalties-minoritaries-del-comite-economic-i-social-europeu\/\" target=\"_blank\" title=\"Feu clic per imprimir\"><span><\/span><span class=\"sharing-screen-reader-text\">Feu clic per imprimir (Opens in new window)<\/span><\/a><\/li><li class=\"share-end\"><\/li><\/ul><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"<p>La Dra. M\u00f2nica Povedano, cap de la Unitat de Malaltia de Motoneurona del Servei de Neurologia de l\u2019Hospital de Bellvitge, va participar el passat 1 de setembre en una sessi\u00f3 sobre l\u2019abordatge de les malalties minorit\u00e0ries (MM) des de les &hellip; <a href=\"http:\/\/blogs.bellvitgehospital.cat\/aulaela\/la-unitat-de-malaltia-de-motoneurona-participa-en-una-sessio-dexperts-en-malalties-minoritaries-del-comite-economic-i-social-europeu\/\">Continua llegint <span class=\"meta-nav\">&rarr;<\/span><\/a><\/p>\n<div class=\"sharedaddy sd-sharing-enabled\"><div class=\"robots-nocontent sd-block sd-social sd-social-icon sd-sharing\"><h3 class=\"sd-title\">Comparteix aix\u00f2:<\/h3><div class=\"sd-content\"><ul><li class=\"share-facebook\"><a rel=\"nofollow\" data-shared=\"sharing-facebook-3864\" class=\"share-facebook sd-button share-icon no-text\" href=\"http:\/\/blogs.bellvitgehospital.cat\/aulaela\/la-unitat-de-malaltia-de-motoneurona-participa-en-una-sessio-dexperts-en-malalties-minoritaries-del-comite-economic-i-social-europeu\/?share=facebook\" target=\"_blank\" title=\"Comparteix al Facebook\"><span><\/span><span class=\"sharing-screen-reader-text\">Comparteix al Facebook (Opens in new window)<\/span><\/a><\/li><li class=\"share-twitter\"><a rel=\"nofollow\" data-shared=\"sharing-twitter-3864\" class=\"share-twitter sd-button share-icon no-text\" href=\"http:\/\/blogs.bellvitgehospital.cat\/aulaela\/la-unitat-de-malaltia-de-motoneurona-participa-en-una-sessio-dexperts-en-malalties-minoritaries-del-comite-economic-i-social-europeu\/?share=twitter\" target=\"_blank\" title=\"Feu clic per compartir al Twitter\"><span><\/span><span class=\"sharing-screen-reader-text\">Feu clic per compartir al Twitter (Opens in new window)<\/span><\/a><\/li><li class=\"share-google-plus-1\"><a rel=\"nofollow\" data-shared=\"sharing-google-3864\" class=\"share-google-plus-1 sd-button share-icon no-text\" href=\"http:\/\/blogs.bellvitgehospital.cat\/aulaela\/la-unitat-de-malaltia-de-motoneurona-participa-en-una-sessio-dexperts-en-malalties-minoritaries-del-comite-economic-i-social-europeu\/?share=google-plus-1\" target=\"_blank\" title=\"Feu clic per compartir a Google+\"><span><\/span><span class=\"sharing-screen-reader-text\">Feu clic per compartir a Google+ (Opens in new window)<\/span><\/a><\/li><li class=\"share-email\"><a rel=\"nofollow\" data-shared=\"\" class=\"share-email sd-button share-icon no-text\" href=\"http:\/\/blogs.bellvitgehospital.cat\/aulaela\/la-unitat-de-malaltia-de-motoneurona-participa-en-una-sessio-dexperts-en-malalties-minoritaries-del-comite-economic-i-social-europeu\/?share=email\" target=\"_blank\" title=\"Feu clic per enviar un correu electr\u00f2nic a un amic\"><span><\/span><span class=\"sharing-screen-reader-text\">Feu clic per enviar un correu electr\u00f2nic a un amic (Opens in new window)<\/span><\/a><\/li><li class=\"share-print\"><a rel=\"nofollow\" data-shared=\"\" class=\"share-print sd-button share-icon no-text\" href=\"http:\/\/blogs.bellvitgehospital.cat\/aulaela\/la-unitat-de-malaltia-de-motoneurona-participa-en-una-sessio-dexperts-en-malalties-minoritaries-del-comite-economic-i-social-europeu\/\" target=\"_blank\" title=\"Feu clic per imprimir\"><span><\/span><span class=\"sharing-screen-reader-text\">Feu clic per imprimir (Opens in new window)<\/span><\/a><\/li><li class=\"share-end\"><\/li><\/ul><\/div><\/div><\/div>","protected":false},"author":10,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":[],"categories":[102,438],"tags":[1493,1494],"_links":{"self":[{"href":"http:\/\/blogs.bellvitgehospital.cat\/aulaela\/wp-json\/wp\/v2\/posts\/3864"}],"collection":[{"href":"http:\/\/blogs.bellvitgehospital.cat\/aulaela\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"http:\/\/blogs.bellvitgehospital.cat\/aulaela\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"http:\/\/blogs.bellvitgehospital.cat\/aulaela\/wp-json\/wp\/v2\/users\/10"}],"replies":[{"embeddable":true,"href":"http:\/\/blogs.bellvitgehospital.cat\/aulaela\/wp-json\/wp\/v2\/comments?post=3864"}],"version-history":[{"count":1,"href":"http:\/\/blogs.bellvitgehospital.cat\/aulaela\/wp-json\/wp\/v2\/posts\/3864\/revisions"}],"predecessor-version":[{"id":3867,"href":"http:\/\/blogs.bellvitgehospital.cat\/aulaela\/wp-json\/wp\/v2\/posts\/3864\/revisions\/3867"}],"wp:attachment":[{"href":"http:\/\/blogs.bellvitgehospital.cat\/aulaela\/wp-json\/wp\/v2\/media?parent=3864"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"http:\/\/blogs.bellvitgehospital.cat\/aulaela\/wp-json\/wp\/v2\/categories?post=3864"},{"taxonomy":"post_tag","embeddable":true,"href":"http:\/\/blogs.bellvitgehospital.cat\/aulaela\/wp-json\/wp\/v2\/tags?post=3864"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}