{"id":2898,"date":"2024-10-24T06:03:55","date_gmt":"2024-10-24T06:03:55","guid":{"rendered":"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/index.php\/2024\/10\/24\/poster-esid-2024\/"},"modified":"2026-03-02T12:00:03","modified_gmt":"2026-03-02T12:00:03","slug":"poster-esid-2024","status":"publish","type":"post","link":"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/index.php\/2024\/10\/24\/poster-esid-2024\/","title":{"rendered":"Presentado el estudio sobre la calidad de atenci\u00f3n al paciente con ataxia telangiectasia"},"content":{"rendered":"<p>&nbsp;<\/p>\n<p><img fetchpriority=\"high\" decoding=\"async\" class=\" alignleft size-full wp-image-2894\" src=\"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2024\/10\/Andrea_Martin_Ataxia_telangiectasia.jpg\" alt=\"Andrea Mart\u00edn Ataxia telangiectasia\" width=\"483\" height=\"464\" style=\"margin: 10px; float: left;\" srcset=\"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2024\/10\/Andrea_Martin_Ataxia_telangiectasia.jpg 1165w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2024\/10\/Andrea_Martin_Ataxia_telangiectasia-300x288.jpg 300w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2024\/10\/Andrea_Martin_Ataxia_telangiectasia-1024x984.jpg 1024w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2024\/10\/Andrea_Martin_Ataxia_telangiectasia-768x738.jpg 768w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2024\/10\/Andrea_Martin_Ataxia_telangiectasia-12x12.jpg 12w\" sizes=\"(max-width: 483px) 100vw, 483px\" \/>La Dra. <strong>Andrea Mart\u00edn, pediatra del Hospital Vall d&#8217;Hebron de Barcelona,&nbsp;<\/strong>ha presentado los datos del trabajo <em>Perceived healthcare quality among patients with ataxia telangiectasia and their healthcare professionals in Spain, <\/em>que se ha realizado con el apoyo de AEFAT y la BCN-PID Foundation, en el ESID meeting 2024 (Marsella, 16-19 de octubre).<\/p>\n<p>Tras las encuestas realizadas a pacientes, familias y profesionales sanitarios, y una vez analizados los resultados, en este p\u00f3ster presentado en el XXI Biennial Meeting of the European Society for Immunodeficiencies (ESID 2024) se han destacado conclusiones como estas:<\/p>\n<ul>\n<li>La importancia del <strong>apoyo psicol\u00f3gico<\/strong> para afectados y familias tras el diagn\u00f3stico<\/li>\n<li>Los afectados necesitan una <strong>atenci\u00f3n multidisciplinar coordinada<\/strong>, dado que es una enfermedad multisist\u00e9mica, e intervienen m\u00e1s de ocho especialidades m\u00e9dicas diferentes (neurolog\u00eda, inmunolog\u00eda, neumolog\u00eda, gen\u00e9tica-oncolog\u00eda, rehabilitaci\u00f3n, gastroenterolog\u00eda, dermatolog\u00eda, oftalmolog\u00eda\u2026)<\/li>\n<li>Se requiere <strong>m\u00e1s coordinaci\u00f3n entre los centros educativos y los especialistas sanitarios<\/strong><\/li>\n<\/ul>\n<p><strong>Muchas gracias<\/strong> al equipo del Hospital Vall d&#8217;Hebron y la BCN-PID Foundation por elaborar este interesante trabajo y dar visibilidad a la situaci\u00f3n actual.<\/p>\n<p>Todos sumamos para mejorar la calidad asistencial a los pacientes con ataxia telangiectasia y sus familias,&nbsp;<\/p>\n<p>Desde Aefat <strong>seguimos trabajando<\/strong> para publicar una Gu\u00eda de Atenci\u00f3n al Paciente con Ataxia Telangiectasia y luchando por la creaci\u00f3n de unidades interdisciplinares que favorezcan una mejor atenci\u00f3n al paciente y una mayor comunicaci\u00f3n entre los especialistas. Gracias a todos los que nos ayud\u00e1is.<\/p>\n<p>Aprovechamos esta publicaci\u00f3n para <strong>felicitar a la&nbsp;<a href=\"https:\/\/www.pidfoundationbcn.org\/\">BCN-PID Foundation<\/a>, que celebra hoy 10 a\u00f1os<\/strong> trabajando para&nbsp;<span><span>promover el&nbsp;<\/span><\/span><span><span>conocimiento<\/span><\/span><span><span>&nbsp;y la&nbsp;<\/span><\/span><span><span>investigaci\u00f3n<\/span><\/span><span><span>&nbsp;en las IDP (inmunodeficiencias primarias), y apoyando la&nbsp;<\/span><\/span><span><span>atenci\u00f3n integral<\/span><\/span><span><span>&nbsp;a los ni\u00f1os y ni\u00f1as con IDP ya sus familiares y cuidadores.<\/span><\/span><\/p>\n<p><img decoding=\"async\" class=\" size-full wp-image-2895\" src=\"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2024\/10\/Poster_AT_ESID_2024_ataxia_telangiectasia.jpg\" alt=\"Poster_AT_ESID_2024_ataxia_telangiectasia.jpg\" width=\"1280\" height=\"720\" srcset=\"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2024\/10\/Poster_AT_ESID_2024_ataxia_telangiectasia.jpg 1280w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2024\/10\/Poster_AT_ESID_2024_ataxia_telangiectasia-300x169.jpg 300w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2024\/10\/Poster_AT_ESID_2024_ataxia_telangiectasia-1024x576.jpg 1024w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2024\/10\/Poster_AT_ESID_2024_ataxia_telangiectasia-768x432.jpg 768w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2024\/10\/Poster_AT_ESID_2024_ataxia_telangiectasia-18x10.jpg 18w\" sizes=\"(max-width: 1280px) 100vw, 1280px\" \/><\/p>\n<p>&nbsp;<\/p>\n<p><img decoding=\"async\" class=\" size-full wp-image-2896\" src=\"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2024\/10\/ESID_2024_ataxia_telangiectasia-scaled.jpg\" alt=\"ESID_2024_ataxia_telangiectasia.jpg\" width=\"4000\" height=\"3000\" srcset=\"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2024\/10\/ESID_2024_ataxia_telangiectasia-scaled.jpg 2560w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2024\/10\/ESID_2024_ataxia_telangiectasia-300x225.jpg 300w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2024\/10\/ESID_2024_ataxia_telangiectasia-1024x768.jpg 1024w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2024\/10\/ESID_2024_ataxia_telangiectasia-768x576.jpg 768w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2024\/10\/ESID_2024_ataxia_telangiectasia-1536x1152.jpg 1536w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2024\/10\/ESID_2024_ataxia_telangiectasia-2048x1536.jpg 2048w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2024\/10\/ESID_2024_ataxia_telangiectasia-16x12.jpg 16w\" sizes=\"(max-width: 4000px) 100vw, 4000px\" \/><\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\" size-full wp-image-2897\" src=\"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2024\/10\/ESID_2024_ataxia_telangiectasia_2-scaled.jpg\" alt=\"ESID_2024_ataxia_telangiectasia_2.jpg\" width=\"3000\" height=\"1688\" srcset=\"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2024\/10\/ESID_2024_ataxia_telangiectasia_2-scaled.jpg 2560w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2024\/10\/ESID_2024_ataxia_telangiectasia_2-300x169.jpg 300w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2024\/10\/ESID_2024_ataxia_telangiectasia_2-1024x576.jpg 1024w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2024\/10\/ESID_2024_ataxia_telangiectasia_2-768x432.jpg 768w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2024\/10\/ESID_2024_ataxia_telangiectasia_2-1536x864.jpg 1536w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2024\/10\/ESID_2024_ataxia_telangiectasia_2-2048x1152.jpg 2048w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2024\/10\/ESID_2024_ataxia_telangiectasia_2-18x10.jpg 18w\" sizes=\"(max-width: 3000px) 100vw, 3000px\" \/><\/p>\n","protected":false},"excerpt":{"rendered":"<p>&nbsp;<\/p>\n<p><img fetchpriority=\"high\" decoding=\"async\" class=\" alignleft size-full wp-image-2894\" src=\"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2024\/10\/Andrea_Martin_Ataxia_telangiectasia.jpg\" alt=\"Andrea Mart\u00edn Ataxia telangiectasia\" width=\"483\" height=\"464\" style=\"margin: 10px; float: left;\" srcset=\"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2024\/10\/Andrea_Martin_Ataxia_telangiectasia.jpg 1165w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2024\/10\/Andrea_Martin_Ataxia_telangiectasia-300x288.jpg 300w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2024\/10\/Andrea_Martin_Ataxia_telangiectasia-1024x984.jpg 1024w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2024\/10\/Andrea_Martin_Ataxia_telangiectasia-768x738.jpg 768w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2024\/10\/Andrea_Martin_Ataxia_telangiectasia-12x12.jpg 12w\" sizes=\"(max-width: 483px) 100vw, 483px\" \/>La Dra. <strong>Andrea Mart\u00edn, pediatra del Hospital Vall d&#8217;Hebron de Barcelona,&nbsp;<\/strong>ha presentado los datos del trabajo <em>Perceived healthcare quality among patients with ataxia telangiectasia and their healthcare professionals in Spain, <\/em>que se ha realizado con el apoyo de AEFAT y la BCN-PID Foundation, en el ESID meeting 2024 (Marsella, 16-19 de octubre).<\/p>\n<p>Tras las encuestas realizadas a pacientes, familias y profesionales sanitarios, y una vez analizados los resultados, en este p\u00f3ster presentado en el XXI Biennial Meeting of the European Society for Immunodeficiencies (ESID 2024) se han destacado conclusiones como estas:<\/p>\n<ul>\n<li>La importancia del <strong>apoyo psicol\u00f3gico<\/strong> para afectados y familias tras el diagn\u00f3stico<\/li>\n<li>Los afectados necesitan una <strong>atenci\u00f3n multidisciplinar coordinada<\/strong>, dado que es una enfermedad multisist\u00e9mica, e intervienen m\u00e1s de ocho especialidades m\u00e9dicas diferentes (neurolog\u00eda, inmunolog\u00eda, neumolog\u00eda, gen\u00e9tica-oncolog\u00eda, rehabilitaci\u00f3n, gastroenterolog\u00eda, dermatolog\u00eda, oftalmolog\u00eda\u2026)<\/li>\n<li>Se requiere <strong>m\u00e1s coordinaci\u00f3n entre los centros educativos y los especialistas sanitarios<\/strong><\/li>\n<\/ul>\n<p><strong>Muchas gracias<\/strong> al equipo del Hospital Vall d&#8217;Hebron y la BCN-PID Foundation por elaborar este interesante trabajo y dar visibilidad a la situaci\u00f3n actual.<\/p>\n<p>Todos sumamos para mejorar la calidad asistencial a los pacientes con ataxia telangiectasia y sus familias,&nbsp;<\/p>\n","protected":false},"author":1,"featured_media":2894,"comment_status":"closed","ping_status":"open","sticky":true,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[811],"tags":[125,71,64],"class_list":["post-2898","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-investigacion","tag-equipo-zurich-at","tag-malaga","tag-maraton"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.2 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Presentado el estudio sobre la calidad de atenci\u00f3n al paciente con ataxia telangiectasia - Aefat<\/title>\n<meta name=\"robots\" content=\"noindex, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Presentado el estudio sobre la calidad de atenci\u00f3n al paciente con ataxia telangiectasia - Aefat\" \/>\n<meta property=\"og:description\" content=\"&nbsp; La Dra. Andrea Mart\u00edn, pediatra del Hospital Vall d&#039;Hebron de Barcelona,&nbsp;ha presentado los datos del trabajo Perceived healthcare quality among patients with ataxia telangiectasia and their healthcare professionals in Spain, que se ha realizado con el apoyo de AEFAT y la BCN-PID Foundation, en el ESID meeting 2024 (Marsella, 16-19 de octubre). Tras las encuestas realizadas a pacientes, familias y profesionales sanitarios, y una vez analizados los resultados, en este p\u00f3ster presentado en el XXI Biennial Meeting of the European Society for Immunodeficiencies (ESID 2024) se han destacado conclusiones como estas:  La importancia del apoyo psicol\u00f3gico para afectados y familias tras el diagn\u00f3stico Los afectados necesitan una atenci\u00f3n multidisciplinar coordinada, dado que es una enfermedad multisist\u00e9mica, e intervienen m\u00e1s de ocho especialidades m\u00e9dicas diferentes (neurolog\u00eda, inmunolog\u00eda, neumolog\u00eda, gen\u00e9tica-oncolog\u00eda, rehabilitaci\u00f3n, gastroenterolog\u00eda, dermatolog\u00eda, oftalmolog\u00eda\u2026) Se requiere m\u00e1s coordinaci\u00f3n entre los centros educativos y los especialistas sanitarios  Muchas gracias al equipo del Hospital Vall d&#039;Hebron y la BCN-PID Foundation por elaborar este interesante trabajo y dar visibilidad a la situaci\u00f3n actual. Todos sumamos para mejorar la calidad asistencial a los pacientes con ataxia telangiectasia y sus familias,&nbsp;\" \/>\n<meta property=\"og:url\" content=\"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/index.php\/2024\/10\/24\/poster-esid-2024\/\" \/>\n<meta property=\"og:site_name\" content=\"Aefat\" \/>\n<meta property=\"article:published_time\" content=\"2024-10-24T06:03:55+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2026-03-02T12:00:03+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2024\/10\/Andrea_Martin_Ataxia_telangiectasia.jpg\" \/>\n\t<meta property=\"og:image:width\" content=\"1165\" \/>\n\t<meta property=\"og:image:height\" content=\"1119\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/jpeg\" \/>\n<meta name=\"author\" content=\"admin\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Escrito por\" \/>\n\t<meta name=\"twitter:data1\" content=\"admin\" \/>\n\t<meta name=\"twitter:label2\" content=\"Tiempo de lectura\" \/>\n\t<meta name=\"twitter:data2\" content=\"2 minutos\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/index.php\/2024\/10\/24\/poster-esid-2024\/#article\",\"isPartOf\":{\"@id\":\"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/index.php\/2024\/10\/24\/poster-esid-2024\/\"},\"author\":{\"name\":\"admin\",\"@id\":\"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/#\/schema\/person\/d75277649f873b670821832f92709a5f\"},\"headline\":\"Presentado el estudio sobre la calidad de atenci\u00f3n al paciente con ataxia telangiectasia\",\"datePublished\":\"2024-10-24T06:03:55+00:00\",\"dateModified\":\"2026-03-02T12:00:03+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/index.php\/2024\/10\/24\/poster-esid-2024\/\"},\"wordCount\":330,\"publisher\":{\"@id\":\"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/#organization\"},\"image\":{\"@id\":\"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/index.php\/2024\/10\/24\/poster-esid-2024\/#primaryimage\"},\"thumbnailUrl\":\"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2024\/10\/Andrea_Martin_Ataxia_telangiectasia.jpg\",\"keywords\":[\"Equipo Zurich AT\",\"M\u00e1laga\",\"marat\u00f3n\"],\"articleSection\":[\"Investigaci\u00f3n\"],\"inLanguage\":\"es\"},{\"@type\":\"WebPage\",\"@id\":\"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/index.php\/2024\/10\/24\/poster-esid-2024\/\",\"url\":\"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/index.php\/2024\/10\/24\/poster-esid-2024\/\",\"name\":\"Presentado el estudio sobre la calidad de atenci\u00f3n al paciente con ataxia telangiectasia - 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Andrea Mart\u00edn, pediatra del Hospital Vall d'Hebron de Barcelona,&nbsp;ha presentado los datos del trabajo Perceived healthcare quality among patients with ataxia telangiectasia and their healthcare professionals in Spain, que se ha realizado con el apoyo de AEFAT y la BCN-PID Foundation, en el ESID meeting 2024 (Marsella, 16-19 de octubre). Tras las encuestas realizadas a pacientes, familias y profesionales sanitarios, y una vez analizados los resultados, en este p\u00f3ster presentado en el XXI Biennial Meeting of the European Society for Immunodeficiencies (ESID 2024) se han destacado conclusiones como estas:  La importancia del apoyo psicol\u00f3gico para afectados y familias tras el diagn\u00f3stico Los afectados necesitan una atenci\u00f3n multidisciplinar coordinada, dado que es una enfermedad multisist\u00e9mica, e intervienen m\u00e1s de ocho especialidades m\u00e9dicas diferentes (neurolog\u00eda, inmunolog\u00eda, neumolog\u00eda, gen\u00e9tica-oncolog\u00eda, rehabilitaci\u00f3n, gastroenterolog\u00eda, dermatolog\u00eda, oftalmolog\u00eda\u2026) Se requiere m\u00e1s coordinaci\u00f3n entre los centros educativos y los especialistas sanitarios  Muchas gracias al equipo del Hospital Vall d'Hebron y la BCN-PID Foundation por elaborar este interesante trabajo y dar visibilidad a la situaci\u00f3n actual. Todos sumamos para mejorar la calidad asistencial a los pacientes con ataxia telangiectasia y sus familias,&nbsp;","og_url":"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/index.php\/2024\/10\/24\/poster-esid-2024\/","og_site_name":"Aefat","article_published_time":"2024-10-24T06:03:55+00:00","article_modified_time":"2026-03-02T12:00:03+00:00","og_image":[{"width":1165,"height":1119,"url":"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2024\/10\/Andrea_Martin_Ataxia_telangiectasia.jpg","type":"image\/jpeg"}],"author":"admin","twitter_card":"summary_large_image","twitter_misc":{"Escrito por":"admin","Tiempo de lectura":"2 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