{"id":1707,"date":"2020-02-04T13:02:00","date_gmt":"2020-02-04T12:02:00","guid":{"rendered":"https:\/\/www.hospitaldemolina.es\/?p=1707"},"modified":"2023-10-25T06:34:23","modified_gmt":"2023-10-25T06:34:23","slug":"vi-jornada-regional-de-enfermedades-raras","status":"publish","type":"post","link":"https:\/\/riberasalud.com\/hospital-de-molina\/vi-jornada-regional-de-enfermedades-raras\/","title":{"rendered":"VI Jornada Regional de Enfermedades Raras"},"content":{"rendered":"\n<p><strong>4 febrero 2020.-<\/strong> Con\nmotivo de la celebraci\u00f3n del D\u00eda Mundial de las Enfermedades Raras (29 de\nfebrero), la <strong>VI <\/strong><strong>Jornada Regional\nde Enfermedades Raras<\/strong>, que\nse celebrar\u00e1 en <strong>Molina de Segura<\/strong> el <strong>viernes 21 de febrero de 16:00 a 20:30\nhoras,<\/strong> en el<strong> Sal\u00f3n de Plenos del Ayuntamiento de Molina\nde Segura<\/strong>, ha sido presentada esta ma\u00f1ana en rueda de prensa.<\/p>\n\n\n\n<figure class=\"wp-block-image size-large\"><img decoding=\"async\" src=\"https:\/\/www.hospitaldemolina.es\/wp-content\/uploads\/2020\/02\/Presentacion-VI-Jornada-EERR-Foto2-min-1024x768.jpg\" alt=\"\" class=\"wp-image-1708\"\/><\/figure>\n\n\n\n<p>Coorganizada por la <strong>Delegaci\u00f3n<\/strong><strong> de Murcia de la Federaci\u00f3n Espa\u00f1ola\nde Enfermedades Raras (FEDER)<\/strong>, el <strong>Ayuntamiento\nde Molina de Segura<\/strong> y el <strong>Hospital de\nMolina<\/strong>, y con la colaboraci\u00f3n del <strong>SMS<\/strong>\ny de la <strong>FEM<\/strong>, esta Jornada reunir\u00e1 a aproximadamente\nun centenar de asistentes entre profesionales relacionados con las enfermedades\nraras y pacientes y familiares.<\/p>\n\n\n\n<p>Durante\nla presentaci\u00f3n de la misma \u2013 en la que tambi\u00e9n han estado presentes el\nPresidente de FEDER, Juan Carri\u00f3n Tudela, el Representante territorial de FEDER\nen la Regi\u00f3n de Murcia, David S\u00e1nchez Gonz\u00e1lez, y el Concejal de Deporte y\nSalud de la localidad, Miguel \u00c1ngel Cantero Garc\u00eda -, el Director-Gerente del\nHospital de Molina, <strong>Pedro Hern\u00e1ndez\nJim\u00e9nez <\/strong>ha resaltado la importancia de realizar Jornadas como \u00e9sta \u201ccon la\nque queremos difundir y concienciar sobre las dificultades que tienen las\npersonas que sufren estas patolog\u00edas y sus familiares. Esta Jornada es una\nmanera de dar voz a estas enfermedades que, a pesar de denominarse raras,\nafectan a una elevada parte de la poblaci\u00f3n mundial, por lo que es necesario\ndirigir los avances en Sanidad hacia la mejora de calidad de vida de estos\npacientes\u201d.<\/p>\n\n\n\n<figure class=\"wp-block-image size-large\"><img decoding=\"async\" src=\"https:\/\/www.hospitaldemolina.es\/wp-content\/uploads\/2020\/02\/Salud-P\u00fablica-Molina-VI-Jornada-Regional-de-Enfermedades-Raras-Presentaci\u00f3n-Foto1-1024x768.jpg\" alt=\"\" class=\"wp-image-1709\"\/><\/figure>\n\n\n\n<p>Durante\nla Jornada, la C\u00e1tedra de Investigaci\u00f3n Hospital de Molina de la UCAM presentar\u00e1\nlos avances realizados en los estudios que est\u00e1 desarrollando sobre \u201cTermograf\u00eda\nen el diagn\u00f3stico de Enfermedades Raras. Avances en la investigaci\u00f3n del aparato\nlocomotor en el S\u00edndrome de Dreyfuss\u201d y \u201cSoluciones quir\u00fargicas ante patolog\u00edas\ndel aparato locomotor en la mano en Enfermedades Raras\u201d.<\/p>\n\n\n\n<figure class=\"wp-block-image size-large\"><img loading=\"lazy\" decoding=\"async\" width=\"415\" height=\"596\" src=\"https:\/\/riberasalud.com\/hospital-de-molina\/wp-content\/uploads\/2020\/02\/2020-Programa-VI-Jornada-EERR.jpg\" alt=\"\" class=\"wp-image-1710\" srcset=\"https:\/\/riberasalud.com\/hospital-de-molina\/wp-content\/uploads\/2020\/02\/2020-Programa-VI-Jornada-EERR.jpg 415w, https:\/\/riberasalud.com\/hospital-de-molina\/wp-content\/uploads\/2020\/02\/2020-Programa-VI-Jornada-EERR-209x300.jpg 209w\" sizes=\"auto, (max-width: 415px) 100vw, 415px\" \/><\/figure>\n\n\n\n<p>Las\ninscripciones deben realizarse en la Concejal\u00eda de Deporte y Salud (a trav\u00e9s de\nsu p\u00e1gina web <a href=\"http:\/\/www.molinadesegura.es\">www.molinadesegura.es<\/a>;\no de su tel\u00e9fono 968 388 520 de lunes a viernes de 8:00 a 15:00 horas) o en la\nDelegaci\u00f3n FEDER-Murcia (a trav\u00e9s de su tel\u00e9fono 968 420 287 de lunes a viernes\nde 9:00 a 13:00 horas). La inscripci\u00f3n es obligatoria y gratuita para todos los\nasistentes a la jornada e incluye documentaci\u00f3n y diploma de asistencia.<\/p>\n\n\n\n<p>Paralelamente,\nel Ayuntamiento de Molina de Segura, el Hospital de Molina, y la Federaci\u00f3n\nEspa\u00f1ola de Enfermedades Raras (FEDER), con la colaboraci\u00f3n de otras entidades,\nhan organizado las siguientes <em>Actividades l\u00fadicas de Sensibilizaci\u00f3n<\/em>, abiertas\na toda la ciudadan\u00eda, que se desarrollar\u00e1n el mismo <strong>viernes 21<\/strong><strong> de febrero<\/strong>, en la Plaza de Espa\u00f1a y\nParque de la Compa\u00f1\u00eda:<\/p>\n\n\n\n\n\n<ul class=\"wp-block-list\"><li>17:00 horas: Dos Sesiones del\n     Programa Municipal \u201cCalle Deportiva\u201d (juegos infantiles tradicionales).<\/li><li>18:00 horas: Vuelta solidaria\n     con salida desde Plaza de Espa\u00f1a a favor de FEDER, sobre un circuito 500\n     metros, en el Parque de la Compa\u00f1\u00eda.<\/li><li>19:00 horas: Master Class Salsation, a cargo del Club Vicanam\n     Kickboxing-Noelia Il\u00e1n. <\/li><\/ul>\n","protected":false},"excerpt":{"rendered":"<p>4 febrero 2020.- Con motivo de la celebraci\u00f3n del D\u00eda Mundial de las Enfermedades Raras (29 de febrero), la VI Jornada Regional de Enfermedades Raras, que se celebrar\u00e1 en Molina de Segura el viernes 21 de febrero de 16:00 a 20:30 horas, en el Sal\u00f3n de Plenos del Ayuntamiento de Molina de Segura, ha sido &#8230; <a title=\"VI Jornada Regional de Enfermedades Raras\" class=\"read-more\" href=\"https:\/\/riberasalud.com\/hospital-de-molina\/vi-jornada-regional-de-enfermedades-raras\/\" aria-label=\"Leer m\u00e1s sobre VI Jornada Regional de Enfermedades Raras\">Leer m\u00e1s<\/a><\/p>\n","protected":false},"author":3,"featured_media":1711,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_uag_custom_page_level_css":"","_mi_skip_tracking":false,"footnotes":""},"categories":[47],"tags":[264,265,266,31,32,35,8,44,24],"class_list":["post-1707","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-noticias","tag-ayuntamiento-de-molina-de-segura","tag-diagnostico","tag-docencia-salud","tag-eerr","tag-enfermedades-raras","tag-feder","tag-hospital-de-molina","tag-investigacion","tag-rsc"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v26.6 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>VI Jornada Regional de Enfermedades Raras - Hospital de Molina<\/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:\/\/riberasalud.com\/hospital-de-molina\/vi-jornada-regional-de-enfermedades-raras\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"VI Jornada Regional de Enfermedades Raras - Hospital de Molina\" \/>\n<meta property=\"og:description\" content=\"4 febrero 2020.- Con motivo de la celebraci\u00f3n del D\u00eda Mundial de las Enfermedades Raras (29 de febrero), la VI Jornada Regional de Enfermedades Raras, que se celebrar\u00e1 en Molina de Segura el viernes 21 de febrero de 16:00 a 20:30 horas, en el Sal\u00f3n de Plenos del Ayuntamiento de Molina de Segura, ha sido ... 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