{"id":63547,"date":"2018-12-27T09:29:43","date_gmt":"2018-12-27T09:29:43","guid":{"rendered":"https:\/\/raed.academy\/?p=63547"},"modified":"2018-12-28T13:38:00","modified_gmt":"2018-12-28T13:38:00","slug":"malalties-rares-infancia","status":"publish","type":"post","link":"https:\/\/raed.academy\/ca\/malalties-rares-infancia\/","title":{"rendered":"Les malalties rares"},"content":{"rendered":"<h2>Joaqu\u00edn Callabed participa a una jornada de refer\u00e8ncia sobre unes patologies que afecten tres milions d&#8217;espanyols<\/h2>\n<div id=\"attachment_63587\" style=\"width: 460px\" class=\"wp-caption alignleft\"><img loading=\"lazy\" decoding=\"async\" aria-describedby=\"caption-attachment-63587\" class=\"wp-image-63587 size-full\" src=\"https:\/\/raed.academy\/wp-content\/uploads\/2018\/12\/Joaquin-callabed.Jornada-Enfermedades-Rarasa.jpeg\" alt=\"Joaqu\u00edn Callabed. Jornada Enfermedades Raras\" width=\"450\" height=\"300\" \/><p id=\"caption-attachment-63587\" class=\"wp-caption-text\">Dr. Joaqu\u00edn Callabed<\/p><\/div>\n<p><strong>Joaqu\u00edn Callabed<\/strong>, president del <strong>Club de Pediatria Social<\/strong> i acad\u00e8mic de n\u00famero electe de la <strong>Reial Acad\u00e8mia Europea de Doctors-Barcelona 1914<\/strong> (RAED), va participar el passat 21 de novembre a la <strong>&#8220;Jornada de la Inf\u00e0ncia i malalties rares. Suport a la fam\u00edlia i a l&#8217;escola&#8221;<\/strong>, organitzada per la <a href=\"https:\/\/fcmb.org\" target=\"_blank\" rel=\"noopener\"><strong>Fundaci\u00f3 Casa de Miseric\u00f2rdia de Barcelona<\/strong><\/a> amb la col\u00b7laboraci\u00f3 de la <a href=\"http:\/\/obrasociallacaixa.org\" target=\"_blank\" rel=\"noopener\"><strong>Fundaci\u00f3 Banc\u00e0ria La Caixa<\/strong><\/a> al <strong>Palau Macaya<\/strong> de Barcelona. Callabed va intervenir amb la pon\u00e8ncia\u00a0<strong>&#8220;El futuro de las enfermedades raras en la infancia&#8221;<\/strong>.<\/p>\n<p>L&#8217;acad\u00e8mic va comen\u00e7ar la seva intervenci\u00f3 explicant que les malalties rares s\u00f3n en realitat un grup de malalties molt nombroses, entre 5.000 i 7.000, que nom\u00e9s a Espanya afecten uns tres milions de persones. Als seus propis problemes sobre la salut s&#8217;afegeixen els del seu diagn\u00f2stic terap\u00e8utic i els problemes socials, familiars i fins i tot bio\u00e8tics que solen comportar. &#8220;El diagn\u00f2stic \u00e9s dif\u00edcil i en molts casos es fa en l&#8217;edat adulta, tot i que avui sabem que la gen\u00e8tica juga un paper b\u00e0sic en la seva prevenci\u00f3&#8221;, va assenyalar.<\/p>\n<p>Callabed va assegurar que el tractament d&#8217;aquestes patologies \u00e9s molt limitat, n&#8217;hi ha pocs f\u00e0rmacs i no resulta rendible investigar per un esc\u00e0s nombre de pacients. Fins al punt que nom\u00e9s un 5% de les malalties rares tenen tractament espec\u00edfic. S\u00f3n necess\u00e0ries ajudes espec\u00edfiques per a la recerca i la f\u00f3rmula magistral, que s&#8217;elabora artesanalment i permet associar medicaments i donar una medicaci\u00f3 a la mesura. Aquesta sol ser l&#8217;\u00fanica esperan\u00e7a per a aquests pacients.<\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"alignright wp-image-63600\" src=\"https:\/\/raed.academy\/wp-content\/uploads\/2018\/12\/jornada-enfermedades-raras-dstNtc.jpg\" alt=\"\" width=\"400\" height=\"220\" \/>M\u00e9s enll\u00e0 d&#8217;aquest tractament farmacol\u00f2gic, l&#8217;acad\u00e8mic va destacar la necessitat que els afectats i les seves fam\u00edlies rebin un suport espec\u00edfic. &#8220;Cal promoure la inclusi\u00f3 educativa dels afectats, promoure la seva participaci\u00f3 al m\u00f3n laboral i potenciar l&#8217;actuaci\u00f3 dels serveis socials, especialment els relacionats amb la discapacitat i la depend\u00e8ncia. Aix\u00ed mateix, cal donar suport a les fam\u00edlies&#8221;, va assenyalar.<\/p>\n<p>A nivell bio\u00e8tic, les malalties rares suposen un repte per a la pluridisciplinarietat i interdisciplinarietat, va afegir Callabed. &#8220;Les limitacions cient\u00edfiques no han de limitar les atencions. La ci\u00e8ncia ens pot dir el que \u00e9s exacte per\u00f2 no all\u00f2 que \u00e9s just i hum\u00e0, perqu\u00e8 com va dir l&#8217;humanista <strong>Fran\u00e7ois Rabelais<\/strong>, la ci\u00e8ncia sense consci\u00e8ncia \u00e9s la ru\u00efna de l&#8217;\u00e0nima&#8221;, va concloure.<\/p>\n<h3><a href=\"https:\/\/fcmb.org\/index.php\/es\/jornadas-fcmb\/item\/284-jornada-infancia-i-malalties-rares\" target=\"_blank\" rel=\"noopener\">Lloc web de la jornada<\/a><\/h3>\n","protected":false},"excerpt":{"rendered":"<p>Joaqu\u00edn Callabed participa a una jornada de refer\u00e8ncia sobre unes patologies que afecten tres milions d&#8217;espanyols Joaqu\u00edn Callabed, president del Club de Pediatria Social i acad\u00e8mic de n\u00famero electe de la Reial Acad\u00e8mia Europea de Doctors-Barcelona 1914 (RAED), va participar el passat 21 de novembre a la &#8220;Jornada de la Inf\u00e0ncia i malalties rares. Suport [&hellip;]<\/p>\n","protected":false},"author":12,"featured_media":63601,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"","_et_pb_old_content":"","_et_gb_content_width":"","footnotes":""},"categories":[213],"tags":[],"class_list":["post-63547","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-medicina-i-cirurgia","et-has-post-format-content","et_post_format-et-post-format-standard"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.4 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Les malalties rares - Reial Acad\u00e8mia Europea de Doctors<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/raed.academy\/ca\/malalties-rares-infancia\/\" \/>\n<meta property=\"og:locale\" content=\"ca_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Les malalties rares - Reial Acad\u00e8mia Europea de Doctors\" \/>\n<meta property=\"og:description\" content=\"Joaqu\u00edn Callabed participa a una jornada de refer\u00e8ncia sobre unes patologies que afecten tres milions d&#8217;espanyols Joaqu\u00edn Callabed, president del Club de Pediatria Social i acad\u00e8mic de n\u00famero electe de la Reial Acad\u00e8mia Europea de Doctors-Barcelona 1914 (RAED), va participar el passat 21 de novembre a la &#8220;Jornada de la Inf\u00e0ncia i malalties rares. 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