{"id":31721,"date":"2024-06-14T09:25:51","date_gmt":"2024-06-14T07:25:51","guid":{"rendered":"http:\/\/sjd.es\/?p=31721"},"modified":"2024-06-14T11:41:50","modified_gmt":"2024-06-14T09:41:50","slug":"edifici-investigacio-malalties-minoritaries-sant-joan-de-deu","status":"publish","type":"post","link":"https:\/\/sjd.es\/ca\/edifici-investigacio-malalties-minoritaries-sant-joan-de-deu\/","title":{"rendered":"L&#8217;edifici pioner per a la recerca de les malalties minorit\u00e0ries a l&#8217;Hospital Sant Joan de D\u00e9u entrar\u00e0 en funcionament el 2026"},"content":{"rendered":"\n<h4 class=\"wp-block-heading\">El projecte per a la construcci\u00f3 i equipament d&#8217;un nou centre pioner a nivell internacional en la recerca i atenci\u00f3 de les malalties minorit\u00e0ries rep el finan\u00e7ament de la Fundaci\u00f3n Amancio Ortega, que permetr\u00e0 impulsar el diagn\u00f2stic personalitzat i l&#8217;aplicaci\u00f3 de noves ter\u00e0pies\u00a0per als pacients pedi\u00e0trics afectats.<\/h4>\n\n\n\n<p class=\"wp-block-paragraph\">L&#8217;Hospital Sant Joan de D\u00e9u Barcelona i la Fundaci\u00f3 Amancio Ortega han signat un conveni de col\u00b7laboraci\u00f3 per impulsar la recerca de les malalties minorit\u00e0ries.&nbsp;La Fundaci\u00f3 Amancio Ortega aportar\u00e0 prop de 60 milions d&#8217;euros per al nou projecte de la construcci\u00f3 i equipament d&#8217;un centre pioner a nivell internacional en la recerca i atenci\u00f3 de les malalties minorit\u00e0ries, que entrar\u00e0 en funcionament a principis del 2026.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">El centre impulsar\u00e0 el coneixement de les malalties minorit\u00e0ries a trav\u00e9s de la recerca i l&#8217;aplicaci\u00f3 de noves ter\u00e0pies. Aquest centre permetr\u00e0 que els menors afectats per aquestes patologies puguin ser diagnosticats amb m\u00e9s antelaci\u00f3 i accedir a noves ter\u00e0pies avan\u00e7ades i tractaments innovadors personalitzats.&nbsp;&nbsp;&nbsp;<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">El centre \u00danicas Sant Joan de D\u00e9u formar\u00e0 part de la Red \u00danicas, una xarxa de 30 hospitals de tota Espanya i impulsada per l&#8217;Hospital Sant Joan de D\u00e9u i la Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras. Aquesta xarxa t\u00e9 com a objectiu promoure l&#8217;intercanvi d&#8217;informaci\u00f3 i compartir coneixements en diagn\u00f2stic de precisi\u00f3 i noves ter\u00e0pies, per a beneficiar aix\u00ed a tots els pacients pedi\u00e0trics, amb independ\u00e8ncia del lloc d&#8217;Espanya on resideixin.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">[<a href=\"https:\/\/www.sjdhospitalbarcelona.org\/ca\/noticies\/sant-joan-deu-fundacion-amancio-ortega-collaboren-creacio-dun-centre-pioner-recerca-malalties-minoritaries\" target=\"_blank\" rel=\"noreferrer noopener\">Continuar llegint<\/a>]<\/p>\n\n\n\n<h5 class=\"wp-block-heading\">Pas de gegant per a la recerca de les malalties minorit\u00e0ries<\/h5>\n\n\n\n<p class=\"wp-block-paragraph\">S&#8217;estima que uns 3 milions de persones a Espanya tenen una malaltia minorit\u00e0ria que, en el 80% dels casos, debuta en l&#8217;edat pedi\u00e0trica. En moltes ocasions aquests pacients passen anys \u2014una mitjana de 4\u2014 fins que aconsegueixen un diagn\u00f2stic espec\u00edfic, requerint de despla\u00e7ar-se de la seva comunitat per a aconseguir-ho. Un exemple n&#8217;\u00e9s en Santiago, un nen de 9 anys i resident a Navarra.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Als 7 anys, Santiago va comen\u00e7ar a presentar s\u00edmptomes d&#8217;una malaltia ultra minorit\u00e0ria denominada DYT-TOR1A, una patologia neurol\u00f2gica que li provocava contraccions involunt\u00e0ries en els m\u00fasculs de les seves extremitats inferiors. La situaci\u00f3 cl\u00ednica va anar empitjorant progressivament fins que finalment va perdre la capacitat de caminar, necessitant utilitzar una cadira de rodes per despla\u00e7ar-se.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Despr\u00e9s de m\u00faltiples visites, un especialista de Navarra, va sospitar que podria tractar-se d&#8217;una distonia i va derivar en Santiago a l&#8217;<a href=\"https:\/\/www.instagram.com\/p\/C8J7kyJP3Ud\/\">Hospital Sant Joan de D\u00e9u de Barcelona<\/a>. El pacient va ser intervingut per un equip del servei de Neurocirurgia, implantant-li un dispositiu d&#8217;estimulaci\u00f3 cerebral profunda. Un mes i mig despr\u00e9s, el pacient ja acudia a la consulta caminant. Actualment, dos anys despr\u00e9s de la intervenci\u00f3, en Santiago camina amb normalitat i pot jugar i portar una vida com qualsevol nen de la seva edat.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">[<a href=\"https:\/\/www.sjdhospitalbarcelona.org\/ca\/noticies\/santiago-va-deixar-caminar-quatre-mesos-avui-corre-juga-futbol\">Coneix m\u00e9s sobre la seva hist\u00f2ria<\/a>]<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>\n","protected":false},"excerpt":{"rendered":"<p>El projecte per a la construcci\u00f3 i equipament d&#8217;un nou centre pioner a nivell internacional en la recerca i atenci\u00f3 de les malalties minorit\u00e0ries rep el finan\u00e7ament de la Fundaci\u00f3n [&hellip;]<\/p>\n","protected":false},"author":21,"featured_media":31712,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"inline_featured_image":false,"_EventAllDay":false,"_EventTimezone":"","_EventStartDate":"","_EventEndDate":"","_EventStartDateUTC":"","_EventEndDateUTC":"","_EventShowMap":false,"_EventShowMapLink":false,"_EventURL":"","_EventCost":"","_EventCostDescription":"","_EventCurrencySymbol":"","_EventCurrencyCode":"","_EventCurrencyPosition":"","_EventDateTimeSeparator":"","_EventTimeRangeSeparator":"","_EventOrganizerID":[],"_EventVenueID":[],"_OrganizerEmail":"","_OrganizerPhone":"","_OrganizerWebsite":"","_VenueAddress":"","_VenueCity":"","_VenueCountry":"","_VenueProvince":"","_VenueState":"","_VenueZip":"","_VenuePhone":"","_VenueURL":"","_VenueStateProvince":"","_VenueLat":"","_VenueLng":"","_VenueShowMap":false,"_VenueShowMapLink":false,"_FSMCFIC_featured_image_caption":"","_FSMCFIC_featured_image_nocaption":"","_FSMCFIC_featured_image_hide":"","footnotes":""},"categories":[407,398,387],"class_list":["post-31721","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-innovacio","category-infancia-ca","category-centres-ca"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.8 - 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