{"id":1209,"date":"2018-02-22T15:46:33","date_gmt":"2018-02-22T14:46:33","guid":{"rendered":"https:\/\/www.neuromuscularbcn.org\/jornada-amb-motiu-del-dia-mundial-de-les-malalties-minoritaries-a-catalunya\/"},"modified":"2025-04-30T07:06:19","modified_gmt":"2025-04-30T05:06:19","slug":"jornada-amb-motiu-del-dia-mundial-de-les-malalties-minoritaries-a-catalunya","status":"publish","type":"post","link":"https:\/\/www.neuromuscularbcn.org\/ca\/jornada-amb-motiu-del-dia-mundial-de-les-malalties-minoritaries-a-catalunya\/","title":{"rendered":"Jornada amb motiu del dia mundial de les malalties minorit\u00e0ries a Catalunya"},"content":{"rendered":"<p><img decoding=\"async\" class=\"size-full wp-image-2993 alignleft\" src=\"https:\/\/www.neuromuscularbcn.org\/wp-content\/uploads\/2018\/02\/programa_220218_img.jpg\" alt=\"\" width=\"382\" height=\"435\" \/>Amb motiu del Dia Mundial de les Malalties Minorit\u00e0ries, la Comissi\u00f3 Gestora del Dia Mundial de les Malalties Minorit\u00e0ries a Catalunya (integrada per associacions de pacients, la Federaci\u00f3 Catalana de Malalties Minorit\u00e0ries, FEDER delegaci\u00f3 Catalunya i la Plataforma de Malalties Minorit\u00e0ries) organitza la seva 11a edici\u00f3.<\/p>\n<p>La jornada tindr\u00e0 lloc el dimecres 28 de febrer, de 9:30h a 15:00h, a la Sala d&#8217;Actes del Pavell\u00f3 Docent de l\u2019Hospital Universitari Vall d\u2019Hebron &#8211; Passeig de la Vall d\u2019Hebron, 119-129 Barcelona.<\/p>\n<p>Sota el lema \u201cFem pinya, Fem recerca\u201d el Dia Mundial de les Malalties Minorit\u00e0ries dedica un any m\u00e9s aquesta edici\u00f3 a la recerca. Enguany fa \u00e8mfasi en la import\u00e0ncia de la recerca com a motor de canvi en el que s\u00f3n part\u00edcips cada vegada m\u00e9s i m\u00e9s efica\u00e7ment els pacients. Tanmateix, es posa l\u2019accent en portar la recerca a nivell internacional, doncs nom\u00e9s aix\u00ed es pot garantir la investigaci\u00f3 en malalties minorit\u00e0ries de forma eficient per un millor i m\u00e9s r\u00e0pid diagn\u00f2stic i per reduir el nombre de persones a tot el m\u00f3n que s&#8217;enfronten al repte diari de viure amb una malaltia minorit\u00e0ria no diagnosticada.<\/p>\n<p><a href=\"https:\/\/drive.google.com\/open?id=1OmXz8Jf33udG2PNw2sAGN1gF6FUAXQnh\" target=\"_blank\" rel=\"noopener\"><strong>Programa de la Jornada<\/strong><\/a><\/p>\n<p>Amb la mirada a les European National Networks (ERNs) s\u2019espera en un futur que aquestes xarxes donin resultats concrets per a desenes de milers de pacients amb malalties minorit\u00e0ries. D\u2019aquesta manera no hauran de buscar mai m\u00e9s respostes a cegues i es podran beneficiar dels millors coneixements especialitzats disponibles a Europa.<\/p>\n<p>Les ERNs ajudaran a garantir un \u00fas m\u00e9s eficient dels recursos, amb un impacte positiu a la sostenibilitat dels sistemes d\u2019assist\u00e8ncia sanit\u00e0ria nacionals. Les xarxes a m\u00e9s de tenir el potencial de fomentar les col\u00b7laboracions internacionals i millorar l\u2019acc\u00e9s a l&#8217;assist\u00e8ncia sanit\u00e0ria, ajudaran a convertir Europa en un centre d&#8217;activitat en mat\u00e8ria de malalties minorit\u00e0ries i complexes.<\/p>\n<p>El v\u00eddeo oficial del Dia Mundial de Malalties Minorit\u00e0ries 2018 realitzat per tota Europa per EURORDIS i tradu\u00eft al Catal\u00e0 per la Plataforma amb la col\u00b7laboraci\u00f3 de M\u00e0rius Serra, escriptor i periodista.<\/p>\n<div class=\"video-shortcode\"><iframe title=\"V\u00eddeo Dia Mundial de les Malalties Minorit\u00e0ries 2018\" width=\"1368\" height=\"770\" src=\"https:\/\/www.youtube.com\/embed\/P79M7h9Y4SA?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe><\/div>\n<p>&nbsp;<\/p>\n<p><strong>Fem pinya, fem recerca<\/strong><\/p>\n<p>La jornada comen\u00e7ar\u00e0 amb una taula dedicada\u00a0 a apropar les accions que s\u2019estan fent des de les European National Networks (ERNs). La segona part de la jornada es dedica a una taula dedicada a la recerca b\u00e0sica i cl\u00ednica, on s\u2019abordaran diferents projectes sobre aquestes patologies de baixa prevalen\u00e7a.<\/p>\n<p>La Dra. Pilar Magriny\u00e0, directora general de planificaci\u00f3 en Salut del Departament de Salut de la Generalitat de Catalunya, lliurar\u00e0 a la cloenda els reconeixements que la Comissi\u00f3 Gestora del dia Mundial atorga als professionals que destaquen per la seva traject\u00f2ria i comprom\u00eds professional en favor de les Malalties Minorit\u00e0ries.<\/p>\n<p>Us agra\u00efm per endavant comptar amb la vostra participaci\u00f3 i preguem que feu extensiva aquesta invitaci\u00f3 a totes aquelles persones de la vostra instituci\u00f3 que considereu que poden estar interessades en assistir-hi.<\/p>\n<p>La inscripci\u00f3 \u00e9s gratu\u00efta i es pot realitzar online mitjan\u00e7ant el seg\u00fcent enlla\u00e7. En el cas que necessiteu int\u00e8rpret en llengua de signes o subtitulaci\u00f3 de textos, si us plau, feu-ho saber al confirmar l\u2019assist\u00e8ncia. Hi haur\u00e0 un dip\u00f2sit d\u2019oxigen l\u00edquid pels assistents que ho necessitin.<\/p>\n<p>Link per inscriure\u2019s:<br \/>\n<a href=\"http:\/\/www.malaltiesminoritaries.org\/portal1\/m_reserva_acto_ficha_cat.asp?event_id=198\" target=\"_blank\" rel=\"noopener\">http:\/\/www.malaltiesminoritaries.org\/portal1\/m_reserva_acto_ficha_cat.asp?event_id=198<\/a><\/p>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Amb motiu del Dia Mundial de les Malalties Minorit\u00e0ries, la Comissi\u00f3 Gestora del Dia Mundial de les Malalties Minorit\u00e0ries a Catalunya (integrada per associacions de pacients, la Federaci\u00f3 Catalana de Malalties Minorit\u00e0ries, FEDER delegaci\u00f3 Catalunya i la Plataforma de Malalties Minorit\u00e0ries) organitza la seva 11a edici\u00f3. La jornada tindr\u00e0 lloc el dimecres 28 de febrer, de 9:30h a 15:00h, a la Sala d&#8217;Actes del Pavell\u00f3 Docent de l\u2019Hospital Universitari Vall d\u2019Hebron &#8211; Passeig de  [&#8230;]<\/p>\n","protected":false},"author":1,"featured_media":1210,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"inline_featured_image":false,"footnotes":""},"categories":[221],"tags":[55],"class_list":["post-1209","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-noticies-ca","tag-malalties-minoritaries"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.2 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Jornada amb motiu del dia mundial de les malalties minorit\u00e0ries a Catalunya - Neuromuscular BCN<\/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:\/\/www.neuromuscularbcn.org\/ca\/jornada-amb-motiu-del-dia-mundial-de-les-malalties-minoritaries-a-catalunya\/\" \/>\n<meta property=\"og:locale\" content=\"ca_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Jornada amb motiu del dia mundial de les malalties minorit\u00e0ries a Catalunya - Neuromuscular BCN\" \/>\n<meta property=\"og:description\" content=\"Amb motiu del Dia Mundial de les Malalties Minorit\u00e0ries, la Comissi\u00f3 Gestora del Dia Mundial de les Malalties Minorit\u00e0ries a Catalunya (integrada per associacions de pacients, la Federaci\u00f3 Catalana de Malalties Minorit\u00e0ries, FEDER delegaci\u00f3 Catalunya i la Plataforma de Malalties Minorit\u00e0ries) organitza la seva 11a edici\u00f3. 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