{"id":19640,"date":"2016-02-29T10:14:42","date_gmt":"2016-02-29T09:14:42","guid":{"rendered":"http:\/\/blog.cofb.cat\/?p=19640"},"modified":"2016-02-29T10:14:42","modified_gmt":"2016-02-29T09:14:42","slug":"29-de-febrer-dia-mundial-de-les-malalties-minoritaries","status":"publish","type":"post","link":"https:\/\/www.cofb.org\/ca\/2016\/02\/29\/29-de-febrer-dia-mundial-de-les-malalties-minoritaries\/","title":{"rendered":"29 de febrer, Dia Mundial de les Malalties Minorit\u00e0ries"},"content":{"rendered":"<p><a href=\"http:\/\/blog.cofb.cat\/wp-content\/uploads\/2016\/02\/rdd-logo-transparent.png\"><img fetchpriority=\"high\" decoding=\"async\" class=\"alignleft  wp-image-19662\" alt=\"rdd-logo-transparent\" src=\"http:\/\/blog.cofb.cat\/wp-content\/uploads\/2016\/02\/rdd-logo-transparent.png\" width=\"252\" height=\"242\" \/><\/a>Avui, 29 de febrer, se celebra el <b>Dia Mundial de les Malalties Minorit\u00e0ries<\/b>. Les malalties minorit\u00e0ries, sovint tamb\u00e9 conegudes com a malalties rares o de baixa prevalen\u00e7a, s\u00f3n un ampli i heterogeni conjunt de patologies que, tal com estableix el l\u00edmit epidemiol\u00f2gic europeu, <b>no afecta a m\u00e9s de 5 persones per cada 10.000 habitants.<\/b> Segons dades de l\u2019OMS, s\u2019estima que hi hauria <b>entre 30 i 35 milions d\u2019afectats a Europa<\/b> i m\u00e9s de 3 milions a Espanya, 400.000 d\u2019elles en Catalunya. <b>&#8220;La Veu del Pacient&#8221;,<\/b> lema d\u2019enguany, vol recon\u00e8ixer el paper fonamental que tenen els pacients fent sentir les seves necessitats, i alhora, com a motors de canvi per millorar les seves vides i les de les seves fam\u00edlies i cuidadors.<\/p>\n<p>En el marc d\u2019aquesta celebraci\u00f3, el <b>Consell de Col\u00b7legis Farmac\u00e8utics de Catalunya (CCFC)<\/b> ha signat un<b> manifest <\/b>(<a title=\"Manifest dels Col\u00b7legis Professionals Sanitaris sobre el sistema sanitari de Catalunya en el moment pol\u00edtic actual\" href=\"http:\/\/blog.cofb.cat\/manifest-dels-col%c2%b7legis-professionals-sanitaris-sobre-el-sistema-sanitari-de-catalunya-en-el-moment-politic-actual\/\" target=\"_blank\" rel=\"noopener\">consultar document en PDF<\/a>)<b> per expressar el seu comprom\u00eds i suport a tots aquells pacients i familiars afectats per una malaltia minorit\u00e0ria.<\/b> Amb aquest document, el CCFC tamb\u00e9 ha volgut posar de manifest que <b>els farmac\u00e8utics<\/b>, des dels seus diferents \u00e0mbits d\u2019actuaci\u00f3 -farm\u00e0cia comunit\u00e0ria, hospital\u00e0ria, atenci\u00f3 prim\u00e0ria o salut p\u00fablica, entre d\u2019altres-, i en coordinaci\u00f3 amb la resta de professionals sanitaris, <b>poden contribuir a millorar el proc\u00e9s assistencial i el benestar dels afectats.<\/b><\/p>\n<p><b>Recursos del COFB<\/b><\/p>\n<p>Per tal que els farmac\u00e8utics tinguin m\u00e9s eines sobre com abordar les consultes i fer el seguiment d\u2019aquestes patologies, la formaci\u00f3 \u00e9s un dels aspectes clau. N\u2019\u00e9s un exemple el<b> curs que va tenir lloc al COFB <\/b>adre\u00e7at a farmac\u00e8utics d\u2019hospital i d\u2019atenci\u00f3 prim\u00e0ria, <b>en qu\u00e8 <a href=\"http:\/\/blog.cofb.cat\/els-farmaceutics-aprofundeixen-coneixements-sobre-malalties-minoritaries-lma-i-malaltia-de-castleman\/\" target=\"_blank\" rel=\"noopener\">es va parlar dels aven\u00e7os terap\u00e8utics en dues malalties minorit\u00e0ries<\/a>:<\/b> la leuc\u00e8mia mieloide aguda (LMA) i la malaltia de Castleman. D\u2019altra banda, al web de salut del COFB, Farmaceuticonline, es va habilitar un <b><a href=\"http:\/\/www.farmaceuticonline.com\/ca\/familia\/683-buscador-enfermedades-raras-y-medicamentos-huerfanos?showall=1\" target=\"_blank\" rel=\"noopener\">cercador de malalties rares i medicaments orfes<\/a> <\/b>amb l\u2019objectiu de fer m\u00e9s accessible la informaci\u00f3 entorn a aquest tema.<\/p>\n<p><b><a href=\"http:\/\/blog.cofb.cat\/wp-content\/uploads\/2016\/02\/dia-mundial-malaties-minoritaries-fecamm.jpg\"><img decoding=\"async\" class=\" wp-image-19677 alignright\" alt=\"dia-mundial-malaties-minoritaries-fecamm\" src=\"http:\/\/blog.cofb.cat\/wp-content\/uploads\/2016\/02\/dia-mundial-malaties-minoritaries-fecamm.jpg\" width=\"226\" height=\"258\" \/><\/a><div class=\"box shadow\"><\/b><strong>Jornada amb motiu del Dia Mundial de les Malalties Minorit\u00e0ries a Catalunya<\/strong><\/p>\n<p>Al llarg d\u2019aquest mat\u00ed, t\u00e9 lloc la Jornada amb motiu del Dia Mundial de les Malalties Minorit\u00e0ries a Catalunya al a la Sala Paranimf, de la facultat de Medicina de la UB a l&#8217;Hospital Cl\u00ednic de Barcelona. Organitzen <a href=\"http:\/\/www.enfermedades-raras.org\/\">FEDER<\/a>, la <a href=\"http:\/\/www.malaltiesminoritaries.org\/portal1\/default.asp\">Plataforma Malalties Minorit\u00e0ries<\/a> i <a href=\"http:\/\/fecamm.org\/\" target=\"_blank\" rel=\"noopener\">FECAMM.<\/a><\/p>\n<p>Podeu consultar el <a href=\"http:\/\/www.malaltiesminoritaries.org\/portal1\/images\/content\/Programa-Jornada-Dia-Mundial-MM2016.pdf\">programa<\/a> i inscriure-us <a href=\"http:\/\/www.malaltiesminoritaries.org\/portal1\/reserva_acto_ficha.asp?event_id=163\">aqu\u00ed.<\/a><\/p>\n<p>Teniu <a href=\"http:\/\/www.malaltiesminoritaries.org\/portal1\/content.asp?contentid=1169\">m\u00e9s informaci\u00f3<\/a> sobre aquesta jornada al web de la Plataforma Malalties Minorit\u00e0ries.<b><\/div><\/b><\/p>\n<p><b>Saber-ne m\u00e9s&#8230;<\/b><\/p>\n<ul>\n<li><strong>Hi ha<\/strong><b>\u00a0m\u00e9s de 7.000 malalties minorit\u00e0ries<\/b><\/li>\n<li><b>Afecten a 5 de cada 10.000 persones<\/b><\/li>\n<li><b>Hi ha 400.000 catalans afectats<\/b><\/li>\n<li><b>Al voltant del 80% s\u00f3n d&#8217;origen gen\u00e8tic<\/b><\/li>\n<li><b>Poden afectar el 3-4% dels nounats<\/b><\/li>\n<\/ul>\n<p style=\"text-align: right;\">[Font: Plataforma malalties minorit\u00e0ries]<\/p>\n<p>Aquest conjunt de malalties presenten caracter\u00edstiques comunes, com el fet que es tracten de malalties greus, cr\u00f2niques i generalment degeneratives, que impliquen diversos \u00f2rgans i afecten les capacitats f\u00edsiques, habilitats mentals, i les qualitats sensorials i de comportament dels malalts. Alhora, moltes d\u2019elles s\u00f3n d\u2019origen gen\u00e8tic, amb una alta afectaci\u00f3 en l\u2019edat pedi\u00e0trica, tot i que n\u2019hi ha que no apareixen fins a l\u2019edat adulta.<\/p>\n<p>El fet que siguin patologies molt diferents dificulta la investigaci\u00f3 i el desenvolupament de medicaments orfes, que s\u00f3n aquells destinats a guarir, prevenir o tractar aquestes malalties. No obstant aix\u00f2, <b>tot i no haver en la majoria dels casos un tractament definitiu, s\u00ed que es pot aconseguir una millora en la qualitat i esperan\u00e7a de vida d\u2019aquests pacients.<\/b><\/p>\n<p><strong>V\u00eddeo oficial del Dia Mundial<\/strong><\/p>\n<div align=\"center\">\n<p><iframe src=\"https:\/\/www.youtube.com\/embed\/OnSsYJNmqCw\" height=\"315\" width=\"560\" allowfullscreen=\"\" frameborder=\"0\"><\/iframe><\/p>\n<div align=\"\/center\">\n<p style=\"text-align: left;\"><a href=\"http:\/\/blog.cofb.cat\/wp-content\/uploads\/2016\/02\/twitter-LOGO.jpg\"><img decoding=\"async\" class=\" wp-image-19080 alignnone\" alt=\"twitter-LOGO\" src=\"http:\/\/blog.cofb.cat\/wp-content\/uploads\/2016\/02\/twitter-LOGO.jpg\" width=\"54\" height=\"54\" \/><\/a>\u00a0Segueix el tema a Twitter! #RareDiseaseDay #DiaMundialMM\u00a0#DiaMundialER<\/p>\n<p style=\"text-align: left;\"><b>Per a m\u00e9s informaci\u00f3:<\/b><\/p>\n<ul>\n<li style=\"text-align: left;\"><a href=\"http:\/\/www.cofb.org\/web\/guest\/Noticia\/-\/journal_content\/56_INSTANCE_V6ao\/10136\/902457\" target=\"_blank\" rel=\"noopener\">Nota de premsa enviada als mitjans<\/a> (via web institucional del COFB)<\/li>\n<li style=\"text-align: left;\"><a href=\"https:\/\/diamundial.enfermedades-raras.org\/\">P\u00e0gina de FEDER sobre el Dia Mundial de les Malalties Minorit\u00e0ries<\/a><\/li>\n<li style=\"text-align: left;\"><a href=\"http:\/\/www.rarediseaseday.org\/\">Campanya internacional<\/a> (via EURORDIS \u2013 Rare Diseases Europe)<\/li>\n<li style=\"text-align: left;\"><a href=\"http:\/\/www.malaltiesminoritaries.org\/portal1\/images\/content\/NOTA-DE-PREMSA-JORNADA-DIA-MUNDIAL-DE-LES-MALALTIES-MINORITARIES-2016.pdf\" target=\"_blank\" rel=\"noopener\">Nota de premsa Plataforma Malalties Minorit\u00e0ries<\/a><\/li>\n<li style=\"text-align: left;\"><a href=\"http:\/\/canalsalut.gencat.cat\/ca\/home_ciutadania\/salut_az\/m\/malalties_minoritaries_nou\/\" target=\"_blank\" rel=\"noopener\">Informaci\u00f3 sobre les Malalties Minorit\u00e0ries i el Dia Mundial al Canal Salut de la Generalitat<\/a><\/li>\n<li style=\"text-align: left;\"><a href=\"http:\/\/www.portalfarma.com\/Profesionales\/DestacadosProfesionales\/Paginas\/Enfermedades-raras.aspx\" target=\"_blank\" rel=\"noopener\">Enfermedades raras<\/a> (via Portalfarma &#8211; Consejo)<\/li>\n<\/ul>\n<\/div>\n<\/div>\n","protected":false},"excerpt":{"rendered":"<p>Avui, 29 de febrer, se celebra el Dia Mundial de les Malalties Minorit\u00e0ries. Les malalties minorit\u00e0ries, sovint tamb\u00e9 conegudes com a malalties rares o de baixa prevalen\u00e7a, s\u00f3n un ampli i heterogeni conjunt de patologies que, tal com estableix el l\u00edmit epidemiol\u00f2gic europeu, no afecta a m\u00e9s de 5 persones [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":19682,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_uag_custom_page_level_css":"","site-sidebar-layout":"default","site-content-layout":"","ast-site-content-layout":"default","site-content-style":"default","site-sidebar-style":"default","ast-global-header-display":"","ast-banner-title-visibility":"","ast-main-header-display":"","ast-hfb-above-header-display":"","ast-hfb-below-header-display":"","ast-hfb-mobile-header-display":"","site-post-title":"","ast-breadcrumbs-content":"","ast-featured-img":"disabled","footer-sml-layout":"","theme-transparent-header-meta":"","adv-header-id-meta":"","stick-header-meta":"","header-above-stick-meta":"","header-main-stick-meta":"","header-below-stick-meta":"","astra-migrate-meta-layouts":"default","ast-page-background-enabled":"default","ast-page-background-meta":{"desktop":{"background-color":"var(--ast-global-color-4)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"ast-content-background-meta":{"desktop":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"footnotes":""},"categories":[32],"tags":[2311,2334,2335],"class_list":["post-19640","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-noticies-farmacia","tag-dia-mundial","tag-malalties-minoritaries","tag-medicaments-orfres"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v22.4 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>29 de febrer, Dia Mundial de les Malalties Minorit\u00e0ries - Col\u00b7legi de Farmac\u00e8utics de Barcelona<\/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:\/\/novaorg.cofb.net\/2016\/02\/29\/29-de-febrer-dia-mundial-de-les-malalties-minoritaries\/\" \/>\n<meta property=\"og:locale\" content=\"ca_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"29 de febrer, Dia Mundial de les Malalties Minorit\u00e0ries - Col\u00b7legi de Farmac\u00e8utics de Barcelona\" \/>\n<meta property=\"og:description\" content=\"Avui, 29 de febrer, se celebra el Dia Mundial de les Malalties Minorit\u00e0ries. 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