{"id":236794,"date":"2024-02-29T14:04:32","date_gmt":"2024-02-29T13:04:32","guid":{"rendered":"https:\/\/fefac.cat\/empresarial\/?p=236794"},"modified":"2024-02-29T14:06:11","modified_gmt":"2024-02-29T13:06:11","slug":"dia-mundial-dels-malalties-minoritaries","status":"publish","type":"post","link":"https:\/\/fefac.cat\/empresarial\/dia-mundial-dels-malalties-minoritaries\/","title":{"rendered":"Dia mundial de les malalties minorit\u00e0ries"},"content":{"rendered":"\n<h2 class=\"wp-block-heading has-text-align-left\">El 29 de febrer se celebra el dia de les malalties menys comunes, per\u00f2 que afecten a m\u00e9s de 300 milions de persones arreu del m\u00f3n<\/h2>\n\n\n\n<p>Es considera malaltia rara (ER) aquella que afecta <strong>menys de 5 persones per cada 10.000 habitants<\/strong>. No obstant aix\u00f2, conviuen amb elles m\u00e9s de <strong>300 milions en el m\u00f3n, 3 d&#8217;ells a Espanya<\/strong>.<\/p>\n\n\n\n<p>Existeixen m\u00e9s de <strong>7.000 malalties rares<\/strong>, que afecten les capacitats f\u00edsiques, habilitats mentals, qualitats sensorials i de comportament d&#8217;aquells que les pateixen. No es coneix quines malalties d&#8217;aquestes s\u00f3n m\u00e9s o menys comunes. Un motiu d&#8217;aix\u00f2 \u00e9s la <strong>diversitat de s\u00edmptomes<\/strong> que varien tamb\u00e9 dins de la mateixa malaltia. La mateixa condici\u00f3 pot tenir manifestacions cl\u00edniques molt diferents d&#8217;una persona a una altra.<\/p>\n\n\n\n<h3 class=\"wp-block-heading\">Caracter\u00edstiques<\/h3>\n\n\n\n<p>Les malalties rares s\u00f3n, en la seva major part, <strong>cr\u00f2niques i degeneratives<\/strong>. De fet, el 65% d&#8217;aquestes patologies s\u00f3n greus i invalidants i es caracteritzen per:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Comen\u00e7ament <strong>preco\u00e7 en la vida<\/strong> (2 de cada 3 apareixen abans dels dos anys)<\/li>\n\n\n\n<li><strong>Dolors cr\u00f2nics <\/strong>(1 de cada 5 malalts)<\/li>\n\n\n\n<li>El <strong>desenvolupament de d\u00e8ficit motor, sensorial o intel\u00b7lectual en la meitat dels casos<\/strong>, que originen una <strong>discapacitat en l&#8217;autonomia (<\/strong>1 de cada 3 casos).<\/li>\n\n\n\n<li>En gaireb\u00e9 la meitat dels casos el pron\u00f2stic vital est\u00e0 en joc, ja que a les malalties rares se li pot atribuir el <strong>35% de les morts abans d&#8217;un any<\/strong>, del 10% entre 1 i 5 anys i el 12% entre els 5 i 15 anys.<\/li>\n<\/ul>\n\n\n\n<h3 class=\"wp-block-heading\">Dificultats<\/h3>\n\n\n\n<p>Un dels principals problemes als quals s&#8217;enfronten les persones amb Malalties Poc Freq\u00fcents \u00e9s l&#8217;<strong>abs\u00e8ncia de diagn\u00f2stic<\/strong>. Un pacient amb una malaltia rara espera una mitjana de <strong>4 anys fins a obtenir un diagn\u00f2stic<\/strong>, en el 20% dels casos transcorren 10 o m\u00e9s anys fins a aconseguir-ho. La causa \u00e9s el <strong>desconeixement que envolta a aquestes patologies<\/strong>, la <strong>dificultat d&#8217;acc\u00e9s a la informaci\u00f3 <\/strong>necess\u00e0ria i la localitzaci\u00f3 de <strong>professionals o centres especialitzats<\/strong>. En gran part dels casos, aquesta <strong>demora diagn\u00f2stica influeix en l&#8217;acc\u00e9s a intervencions terap\u00e8utiques,<\/strong> la qual cosa comporta, un agreujament de la malaltia que podria haver-se evitat pr\u00e8viament..<\/p>\n\n\n\n<p>Altres dades interessants sobre les persones que pateixen aquestes malalties, \u00e9s que el <strong>46,82% no se sent satisfet amb l&#8217;atenci\u00f3 sanit\u00e0ria <\/strong>que reben per la seva malaltia. A m\u00e9s que la <strong>cobertura de productes sanitaris per la Sanitat P\u00fablica \u00e9s escassa o nul\u00b7la<\/strong> (21% dels casos). Una altra dificultat \u00e9s la quantitat de persones amb una malaltia rara que <strong>s&#8217;han hagut de despla\u00e7ar fora de la seva prov\u00edncia en cerca de diagn\u00f2stic o tractament<\/strong>. Aix\u00ed com, el paper que juga la discriminaci\u00f3 en aquestes malalties,  <strong>un 43% es va sentir discrimina<\/strong>t, almenys, en alguna ocasi\u00f3 de la seva vida causa de la seva malaltia.<\/p>\n\n\n\n<p><strong>Font<\/strong>: FEDER \/Imatge: Freepik<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Es considera malaltia rara (ER) aquella que afecta a menys de 5 persones per cada 10.000 habitants. No obstant aix\u00f2, conviuen amb elles m\u00e9s de 300 milions en el m\u00f3n, 3 d&#8217;ells a Espanya.<\/p>\n","protected":false},"author":5,"featured_media":236796,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"off","_et_pb_old_content":"<!-- wp:heading {\"textAlign\":\"left\"} -->\n<h2 class=\"has-text-align-left\">Ja est\u00e0 disponible la mem\u00f2ria d'activitats de la FEFAC corresponent a l'any 2022<\/h2>\n<!-- \/wp:heading -->\n\n<!-- wp:paragraph -->\n<p><\/p>\n<!-- \/wp:paragraph -->\n\n<!-- wp:paragraph -->\n<p>La <strong><em><span style=\"text-decoration: underline\"><a href=\"https:\/\/fefac.cat\/empresarial\/wp-content\/uploads\/2023\/04\/MEMORIA_2022.pdf\" target=\"_blank\" rel=\"noreferrer noopener\">Mem\u00f2ria d'activitats de la FEFAC<\/a> <\/span><\/em><\/strong>ja est\u00e0 disponible per a la seva consulta. Aquesta recopila totes les <strong>activitats dutes a terme durant l'\u00faltim any i ofereix una visi\u00f3 completa dels assoliments i desafiaments <\/strong>que l'empresarial ha enfrontat.<\/p>\n<!-- \/wp:paragraph -->\n\n<!-- wp:paragraph -->\n<p>En la mem\u00f2ria d'activitats, es poden trobar <strong>detalls sobre les reunions i esdeveniments al llarg de 2022,<\/strong> aix\u00ed com els <strong>projectes i activitats <\/strong>desenvolupats en col\u00b7laboraci\u00f3 amb altres organitzacions. A m\u00e9s, s'inclou <strong>informaci\u00f3 rellevant sobre l'evoluci\u00f3 dels diferents projectes i les gestions amb mitjans de comunicaci\u00f3 i impactes de premsa.<\/strong><\/p>\n<!-- \/wp:paragraph -->\n\n<!-- wp:paragraph -->\n<p>La mem\u00f2ria d'activitats permet con\u00e8ixer de primera m\u00e0 les<strong> iniciatives dutes a terme  i els resultats obtinguts. <\/strong>Aix\u00ed mateix, la mem\u00f2ria ens brinda l'oportunitat de <strong>reflexionar sobre els desafiaments enfrontats <\/strong>i de definir estrat\u00e8gies per al futur.<\/p>\n<!-- \/wp:paragraph -->","_et_gb_content_width":"","footnotes":""},"categories":[2066,10,11,12,13,14,15],"tags":[233,1127,1128,1733,2660],"class_list":["post-236794","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-categoria-actualitat","category-empresarials","category-fefac","category-afb","category-afet","category-afell","category-agfe","tag-malalties-rares","tag-farmacia","tag-farmaceutic","tag-dia-mundial","tag-feder"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.5 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Dia mundial dels malalties minorit\u00e0ries<\/title>\n<meta name=\"description\" content=\"El 29 de febrer se celebra el dia de les malalties menys comunes, per\u00f2 que afecten a m\u00e9s de 300 milions de persones arreu del m\u00f3n.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" 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