{"id":2303,"date":"2023-06-05T12:41:37","date_gmt":"2023-06-05T10:41:37","guid":{"rendered":"https:\/\/hypertrophiccardiomyopathyacoruna.com\/?page_id=2303"},"modified":"2023-09-08T11:34:22","modified_gmt":"2023-09-08T09:34:22","slug":"pacientes","status":"publish","type":"page","link":"https:\/\/test.hypertrophiccardiomyopathyacoruna.com\/es\/pacientes\/","title":{"rendered":"Pacientes"},"content":{"rendered":"<p>[et_pb_section fb_built=&#8221;1&#8243; _builder_version=&#8221;4.18.0&#8243; _module_preset=&#8221;default&#8221; background_image=&#8221;https:\/\/test.hypertrophiccardiomyopathyacoruna.com\/wp-content\/uploads\/2022\/10\/banner_presentacion.png&#8221; custom_margin=&#8221;-20px||||false|false&#8221; custom_padding=&#8221;||14px|||&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_row _builder_version=&#8221;4.18.0&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;4_4&#8243; _builder_version=&#8221;4.18.0&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_post_title meta=&#8221;off&#8221; featured_image=&#8221;off&#8221; _builder_version=&#8221;4.18.0&#8243; _module_preset=&#8221;default&#8221; title_font=&#8221;|700|||||||&#8221; title_text_align=&#8221;center&#8221; title_text_color=&#8221;#FFFFFF&#8221; title_font_size=&#8221;44px&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_post_title][et_pb_code _builder_version=&#8221;4.18.0&#8243; _module_preset=&#8221;default&#8221; custom_css_main_element=&#8221;color: #FFFFFF;&#8221; global_colors_info=&#8221;{}&#8221;]<span><span><a href=\"https:\/\/hypertrophiccardiomyopathyacoruna.com\/\">Home<\/a><\/span><\/span>[\/et_pb_code][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=&#8221;1&#8243; _builder_version=&#8221;4.18.0&#8243; _module_preset=&#8221;default&#8221; background_image=&#8221;https:\/\/test.hypertrophiccardiomyopathyacoruna.com\/wp-content\/uploads\/2022\/10\/fondo_web.png&#8221; custom_padding=&#8221;2px|||||&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_row _builder_version=&#8221;4.18.0&#8243; _module_preset=&#8221;default&#8221; custom_padding=&#8221;36px||36px||true|&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;4_4&#8243; _builder_version=&#8221;4.16&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_image src=&#8221;https:\/\/test.hypertrophiccardiomyopathyacoruna.com\/wp-content\/uploads\/2023\/08\/MH23_banner_pacientes.png&#8221; title_text=&#8221;Pacientes&#8221; align=&#8221;center&#8221; _builder_version=&#8221;4.20.2&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_image][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=&#8221;1_2,1_2&#8243; _builder_version=&#8221;4.20.2&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;1_2&#8243; _builder_version=&#8221;4.20.2&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text _builder_version=&#8221;4.20.2&#8243; _module_preset=&#8221;default&#8221; header_2_font=&#8221;|600|||||||&#8221; header_2_text_color=&#8221;#0E3E66&#8243; header_2_font_size=&#8221;24px&#8221; text_orientation=&#8221;justified&#8221; hover_enabled=&#8221;0&#8243; global_colors_info=&#8221;{}&#8221; sticky_enabled=&#8221;0&#8243;]<\/p>\n<h2>PARTICIPANTES EN COLOQUIO<\/h2>\n<ul>\n<li>Lourdes Maldonado (Periodista) | Moderadora<\/li>\n<li>Raquel V\u00e1zquez Mourelle, Subdirectora Xeral de Atenci\u00f3n Hospitalaria (Servizo Galego de Saude)<\/li>\n<li>Eduardo Iglesias Garc\u00eda (Presidente del Consello Galego de Colexios M\u00e9dicos)<\/li>\n<li>Pedro J. Marcos (Neum\u00f3logo, Director Asistencial del CHUAC)<\/li>\n<li>Jose Manuel V\u00e1zquez Rodr\u00edguez, Jefe de Servicio de Cardiolog\u00eda del CHUAC<\/li>\n<li>Alejandro D\u00edaz Sueiro (Asociaci\u00f3n Amiloidosis Visible)<\/li>\n<li>Carmen L\u00f3pez Rodr\u00edguez (Federaci\u00f3n Gallega de Enfermedades Raras e Cr\u00f3nicas, FEGEREC)<\/li>\n<li>Susana Portela Hern\u00e1ndez (Late Coraz\u00f3n! Asociaci\u00f3n Gallega de Cardiopat\u00edas Cong\u00e9nitas y Cardiopat\u00edas Familiares)<\/li>\n<li>Profesor William J. Mckenna (Cardi\u00f3logo, University College of London)<\/li>\n<li>Roberto Barriales Villa (Cardi\u00f3logo, Unidad de Cardiopat\u00edas Familiares del CHUAC)<\/li>\n<\/ul>\n<h2>OBJETIVOS<\/h2>\n<ul>\n<li>Mostrar la necesidad de las asociaciones de pacientes en las enfermedades raras o poco frecuentes.<\/li>\n<li>Discutir los problemas del movimiento asociativo en Espa\u00f1a.<\/li>\n<li>Buscar soluciones a problemas comunes.<\/li>\n<li>Invitaremos a expertos en la materia para que respondan a estas consultas y proporcionen informaci\u00f3n actualizada.<\/li>\n<\/ul>\n<h2>TEMAS DE DISCUSI\u00d3N<\/h2>\n<p><strong><span style=\"color: #e72b6c;\">Informaci\u00f3n y educaci\u00f3n:<\/span><\/strong> Las asociaciones de pacientes de MCH requieren acceso a informaci\u00f3n actualizada y precisa sobre la enfermedad, incluyendo s\u00edntomas, diagn\u00f3stico, tratamientos, avances m\u00e9dicos, ensayos cl\u00ednicos y recomendaciones de expertos. Esta<br \/>\ninformaci\u00f3n es fundamental para que los pacientes y sus familias puedan comprender y manejar la condici\u00f3n de manera efectiva.[\/et_pb_text][\/et_pb_column][et_pb_column type=&#8221;1_2&#8243; _builder_version=&#8221;4.20.2&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text _builder_version=&#8221;4.20.2&#8243; _module_preset=&#8221;default&#8221; header_2_font=&#8221;|600|||||||&#8221; header_2_text_color=&#8221;#0E3E66&#8243; header_2_font_size=&#8221;24px&#8221; text_orientation=&#8221;justified&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<p><strong><span style=\"color: #e72b6c;\">Apoyo emocional y social:<\/span><\/strong> La MCH puede tener un impacto significativo en la vida de los pacientes y sus seres queridos. Por lo tanto, es esencial que las asociaciones proporcionen un entorno de apoyo emocional y social, donde los pacientes puedan compartir sus experiencias, obtener consuelo mutuo y sentirse comprendidos. El intercambio de historias, consejos y estrategias de afrontamiento puede ser muy beneficioso.<\/p>\n<p><strong><span style=\"color: #e72b6c;\">Recursos m\u00e9dicos y acceso a profesionales de la salud:<\/span><\/strong> Las asociaciones deben facilitar el acceso a recursos m\u00e9dicos confiables, como m\u00e9dicos especialistas en cardiopat\u00edas familiares as\u00ed como a servicios de salud especializados. Esto puede incluir la organizaci\u00f3n<br \/>de consultas m\u00e9dicas, la recomendaci\u00f3n de expertos o la creaci\u00f3n de una red de profesionales de confianza.<\/p>\n<p><strong><span style=\"color: #e72b6c;\">Promoci\u00f3n de la conciencia y la investigaci\u00f3n:<\/span><\/strong> Las asociaciones de pacientes de MCH desempe\u00f1an un papel crucial en la promoci\u00f3n de la conciencia p\u00fablica sobre la enfermedad y en la defensa de los derechos y necesidades de los pacientes. Tambi\u00e9n pueden impulsar la investigaci\u00f3n y colaborar con instituciones m\u00e9dicas y cient\u00edficas para fomentar el avance en la comprensi\u00f3n y el tratamiento de la MCH.<\/p>\n<p><strong><span style=\"color: #e72b6c;\">Apoyo a las familias y cuidadores:<\/span><\/strong> La MCH afecta no solo a los pacientes, sino tambi\u00e9n a sus familias y cuidadores. Las asociaciones pueden proporcionar informaci\u00f3n, recursos y apoyo espec\u00edfico para ayudar a los familiares a comprender y manejar la enfermedad, as\u00ed como a cuidar de sus seres queridos de manera efectiva.<\/p>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=&#8221;4.18.0&#8243; _module_preset=&#8221;default&#8221; custom_padding=&#8221;36px||36px||true|&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;4_4&#8243; _builder_version=&#8221;4.16&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_button button_url=&#8221;https:\/\/docs.google.com\/forms\/d\/e\/1FAIpQLSe0aBT-Ut0qSMfSHr8aUgEpk_EfAmirGk6tUm8eBZORZQxM_A\/viewform&#8221; url_new_window=&#8221;on&#8221; button_text=&#8221;Formulario de inscripci\u00f3n &#8221; button_alignment=&#8221;center&#8221; _builder_version=&#8221;4.20.2&#8243; _module_preset=&#8221;default&#8221; custom_button=&#8221;on&#8221; button_text_color=&#8221;#FFFFFF&#8221; button_bg_color=&#8221;#0E3E66&#8243; button_icon=&#8221;&#x6c;||divi||400&#8243; button_icon_placement=&#8221;left&#8221; button_on_hover=&#8221;off&#8221; custom_css_main_element=&#8221;width:100%;&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_button][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>\n","protected":false},"excerpt":{"rendered":"<p><span><span><a href=\"https:\/\/hypertrophiccardiomyopathyacoruna.com\/\">Home<\/a><\/span><\/span>PARTICIPANTES EN COLOQUIO Lourdes Maldonado (Periodista) | Moderadora Raquel V\u00e1zquez Mourelle, Subdirectora Xeral de Atenci\u00f3n Hospitalaria (Servizo Galego de Saude) Eduardo Iglesias Garc\u00eda (Presidente del Consello Galego de Colexios M\u00e9dicos) Pedro J. Marcos (Neum\u00f3logo, Director Asistencial del CHUAC) Jose Manuel V\u00e1zquez Rodr\u00edguez, Jefe de Servicio de Cardiolog\u00eda del CHUAC Alejandro D\u00edaz Sueiro (Asociaci\u00f3n Amiloidosis Visible) [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"","_et_gb_content_width":"","footnotes":""},"class_list":["post-2303","page","type-page","status-publish","hentry"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.5 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Pacientes - hypertrophic cardiomyopathy 2027<\/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:\/\/hypertrophiccardiomyopathyacoruna.com\/pacientes\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Pacientes - hypertrophic cardiomyopathy 2027\" \/>\n<meta property=\"og:description\" content=\"PARTICIPANTES EN COLOQUIO Lourdes Maldonado (Periodista) | Moderadora Raquel V\u00e1zquez Mourelle, Subdirectora Xeral de Atenci\u00f3n Hospitalaria (Servizo Galego de Saude) Eduardo Iglesias Garc\u00eda (Presidente del Consello Galego de Colexios M\u00e9dicos) Pedro J. Marcos (Neum\u00f3logo, Director Asistencial del CHUAC) Jose Manuel V\u00e1zquez Rodr\u00edguez, Jefe de Servicio de Cardiolog\u00eda del CHUAC Alejandro D\u00edaz Sueiro (Asociaci\u00f3n Amiloidosis Visible) [&hellip;]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/hypertrophiccardiomyopathyacoruna.com\/pacientes\/\" \/>\n<meta property=\"og:site_name\" content=\"hypertrophic cardiomyopathy 2027\" \/>\n<meta property=\"article:modified_time\" content=\"2023-09-08T09:34:22+00:00\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Tiempo de lectura\" \/>\n\t<meta name=\"twitter:data1\" content=\"2 minutos\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/hypertrophiccardiomyopathyacoruna.com\\\/pacientes\\\/\",\"url\":\"https:\\\/\\\/hypertrophiccardiomyopathyacoruna.com\\\/pacientes\\\/\",\"name\":\"Pacientes - hypertrophic cardiomyopathy 2027\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/test.hypertrophiccardiomyopathyacoruna.com\\\/#website\"},\"datePublished\":\"2023-06-05T10:41:37+00:00\",\"dateModified\":\"2023-09-08T09:34:22+00:00\",\"breadcrumb\":{\"@id\":\"https:\\\/\\\/hypertrophiccardiomyopathyacoruna.com\\\/pacientes\\\/#breadcrumb\"},\"inLanguage\":\"es\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\\\/\\\/hypertrophiccardiomyopathyacoruna.com\\\/pacientes\\\/\"]}]},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\\\/\\\/hypertrophiccardiomyopathyacoruna.com\\\/pacientes\\\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Home\",\"item\":\"https:\\\/\\\/hypertrophiccardiomyopathyacoruna.com\\\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"Pacientes\"}]},{\"@type\":\"WebSite\",\"@id\":\"https:\\\/\\\/test.hypertrophiccardiomyopathyacoruna.com\\\/#website\",\"url\":\"https:\\\/\\\/test.hypertrophiccardiomyopathyacoruna.com\\\/\",\"name\":\"hypertrophic cardiomyopathy 2027\",\"description\":\"hypertrophic cardiomyopathy 2027\",\"potentialAction\":[{\"@type\":\"SearchAction\",\"target\":{\"@type\":\"EntryPoint\",\"urlTemplate\":\"https:\\\/\\\/test.hypertrophiccardiomyopathyacoruna.com\\\/?s={search_term_string}\"},\"query-input\":{\"@type\":\"PropertyValueSpecification\",\"valueRequired\":true,\"valueName\":\"search_term_string\"}}],\"inLanguage\":\"es\"}]}<\/script>\n<!-- \/ Yoast SEO plugin. -->","yoast_head_json":{"title":"Pacientes - hypertrophic cardiomyopathy 2027","robots":{"index":"index","follow":"follow","max-snippet":"max-snippet:-1","max-image-preview":"max-image-preview:large","max-video-preview":"max-video-preview:-1"},"canonical":"https:\/\/hypertrophiccardiomyopathyacoruna.com\/pacientes\/","og_locale":"es_ES","og_type":"article","og_title":"Pacientes - hypertrophic cardiomyopathy 2027","og_description":"PARTICIPANTES EN COLOQUIO Lourdes Maldonado (Periodista) | Moderadora Raquel V\u00e1zquez Mourelle, Subdirectora Xeral de Atenci\u00f3n Hospitalaria (Servizo Galego de Saude) Eduardo Iglesias Garc\u00eda (Presidente del Consello Galego de Colexios M\u00e9dicos) Pedro J. 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