{"id":2437,"date":"2021-10-20T16:32:43","date_gmt":"2021-10-20T16:32:43","guid":{"rendered":"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/index.php\/2021\/10\/20\/la-alianza-internacional-crece\/"},"modified":"2026-03-02T12:01:20","modified_gmt":"2026-03-02T12:01:20","slug":"la-alianza-internacional-crece","status":"publish","type":"post","link":"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/index.php\/2021\/10\/20\/la-alianza-internacional-crece\/","title":{"rendered":"La Alianza Internacional crece"},"content":{"rendered":"<p style=\"text-align: justify;\"><img fetchpriority=\"high\" decoding=\"async\" class=\" size-full wp-image-2436\" src=\"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2021\/10\/A-T_Alliance.JPG\" alt=\"A T Alliance\" width=\"1080\" height=\"1080\" srcset=\"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2021\/10\/A-T_Alliance.JPG 1080w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2021\/10\/A-T_Alliance-300x300.jpg 300w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2021\/10\/A-T_Alliance-1024x1024.jpg 1024w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2021\/10\/A-T_Alliance-150x150.jpg 150w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2021\/10\/A-T_Alliance-768x768.jpg 768w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2021\/10\/A-T_Alliance-12x12.jpg 12w\" sizes=\"(max-width: 1080px) 100vw, 1080px\" \/>\u00a1Juntos somos m\u00e1s fuertes! Queremos dar la bienvenida a la asociaci\u00f3n italiana <a href=\"https:\/\/www.associazione-at.it\/\">ANAT<\/a> (Associazione Nazionale Atassia Telangiectasia), que se ha unido a la A-T Global Alliance para impulsar la investigaci\u00f3n de la ataxia telangiectasia y buscar recursos para mejorar la atenci\u00f3n a los pacientes con esta enfermedad rara, gen\u00e9tica y neurodegenerativa que a\u00fan no tiene cura. ANAT agrupa a unas 50 familias y est\u00e1 financiando varios proyectos de investigaci\u00f3n.<\/p>\n<p style=\"text-align: justify;\">La A-T Global Alliance se cre\u00f3 en 2020, en plena pandemia, para reforzar la colaboraci\u00f3n entre cinco asociaciones relacionadas con la ataxia telangiectasia de distintos pa\u00edses: <strong><a href=\"https:\/\/actionforat.org\/\">Action for A-T<\/a><\/strong>, <strong><a href=\"https:\/\/www.atsociety.org.uk\/\">A-T Society<\/a><\/strong> (ambas de Reino Unido), <strong><a href=\"https:\/\/brashat.org.au\/\">BrAshA-T<\/a><\/strong> (Australia), la nuestra,&nbsp;<strong><a href=\"https:\/\/www.aefat.es\/\">Aefat<\/a><\/strong> (Espa\u00f1a) y<strong>&nbsp;<a href=\"https:\/\/www.atcp.org\/\">A-T Children&#8217;s Project<\/a><\/strong> (Estados Unidos).<\/p>\n<p style=\"text-align: justify;\">La Alianza mantiene contacto constante y celebra una <strong>reuni\u00f3n online cada tres meses<\/strong> para hablar sobre investigaci\u00f3n y ensayos cl\u00ednicos, proyectos conjuntos de recaudaci\u00f3n, sensibilizaci\u00f3n y difusi\u00f3n, y sobre las actividades locales que desarrolla cada asociaci\u00f3n. Tambi\u00e9n comparten conocimientos y proyectos sobre atenci\u00f3n a pacientes y familiares.<\/p>\n<p style=\"text-align: justify;\">Esta alianza internacional lanz\u00f3 el pasado mes de abril la plataforma <strong><a href=\"http:\/\/www.cureat.org\/\">www.cureat.org<\/a>, <\/strong>la <strong>primera web internacional sobre la ataxia telangiectasia<\/strong>, disponible en ingl\u00e9s y en espa\u00f1ol. En los \u00faltimos meses, la p\u00e1gina web ha sido traducida tambi\u00e9n al italiano, al franc\u00e9s y al turco, con la colaboraci\u00f3n de las correspondientes asociaciones de cada pa\u00eds: la italiana <strong><a href=\"https:\/\/www.associazione-at.it\/\">ANAT<\/a><\/strong> (Associazione Nazionale Atassia Telangiectasia), la francesa <strong><a href=\"https:\/\/www.ateurope.org\/es\/\">AT Europe<\/a><\/strong> y la turca <strong><a href=\"https:\/\/atileyasam.org\/\">Ataksi Telenjiektazi ile Ya\u015fam Derne\u011fi<\/a>.<\/strong><\/p>\n<p style=\"text-align: justify;\">La p\u00e1gina web re\u00fane toda la informaci\u00f3n m\u00e1s importante sobre la ataxia telangiectasia, tanto para <strong>investigadores, profesionales sanitarios como para los pacientes y sus familias<\/strong>: proyectos de investigaci\u00f3n y ensayos cl\u00ednicos, atenci\u00f3n al paciente, registros, posibilidades de colaboraci\u00f3n, eventos y congresos, etc. La p\u00e1gina ofrece enlaces a cada una de las casi 20 asociaciones que existen en diferentes pa\u00edses.<\/p>\n<p style=\"text-align: justify;\">La <strong>ataxia telangiectasia<\/strong> es uno de los m\u00e1s de 300 tipos de ataxia que existen. Provoca una grave discapacidad progresiva, inmunodeficiencia, problemas respiratorios, dificultad en el habla y m\u00e1s posibilidad de tener c\u00e1ncer, entre otras complicaciones. Los afectados, en su mayor\u00eda ni\u00f1os y j\u00f3venes, son plenamente conscientes de su enfermedad, ya que no afecta a sus facultades mentales.<\/p>\n<p style=\"text-align: justify;\"><span style=\"color: #ff00ff;\"><strong>Campa\u00f1a internacional conjunta de sensibilizaci\u00f3n 2020:&nbsp;<\/strong>https:\/\/www.youtube.com\/watch?v=rtwGsOa0kV4&amp;t=6s<\/span><\/p>\n","protected":false},"excerpt":{"rendered":"<p style=\"text-align: justify;\"><img fetchpriority=\"high\" decoding=\"async\" class=\" size-full wp-image-2436\" src=\"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2021\/10\/A-T_Alliance.JPG\" alt=\"A T Alliance\" width=\"1080\" height=\"1080\" srcset=\"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2021\/10\/A-T_Alliance.JPG 1080w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2021\/10\/A-T_Alliance-300x300.jpg 300w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2021\/10\/A-T_Alliance-1024x1024.jpg 1024w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2021\/10\/A-T_Alliance-150x150.jpg 150w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2021\/10\/A-T_Alliance-768x768.jpg 768w, https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/wp-content\/uploads\/2021\/10\/A-T_Alliance-12x12.jpg 12w\" sizes=\"(max-width: 1080px) 100vw, 1080px\" \/>\u00a1Juntos somos m\u00e1s fuertes! Queremos dar la bienvenida a la asociaci\u00f3n italiana <a href=\"https:\/\/www.associazione-at.it\/\">ANAT<\/a> (Associazione Nazionale Atassia Telangiectasia), que se ha unido a la A-T Global Alliance para impulsar la investigaci\u00f3n de la ataxia telangiectasia y buscar recursos para mejorar la atenci\u00f3n a los pacientes con esta enfermedad rara, gen\u00e9tica y neurodegenerativa que a\u00fan no tiene cura. ANAT agrupa a unas 50 familias y est\u00e1 financiando varios proyectos de investigaci\u00f3n.<\/p>\n<p style=\"text-align: justify;\">La A-T Global Alliance se cre\u00f3 en 2020, en plena pandemia, para reforzar la colaboraci\u00f3n entre cinco asociaciones relacionadas con la ataxia telangiectasia de distintos pa\u00edses: <strong><a href=\"https:\/\/actionforat.org\/\">Action for A-T<\/a><\/strong>, <strong><a href=\"https:\/\/www.atsociety.org.uk\/\">A-T Society<\/a><\/strong> (ambas de Reino Unido), <strong><a href=\"https:\/\/brashat.org.au\/\">BrAshA-T<\/a><\/strong> (Australia), la nuestra,&nbsp;<strong><a href=\"https:\/\/www.aefat.es\/\">Aefat<\/a><\/strong> (Espa\u00f1a) y<strong>&nbsp;<a href=\"https:\/\/www.atcp.org\/\">A-T Children&#8217;s Project<\/a><\/strong> (Estados Unidos).<\/p>\n","protected":false},"author":1,"featured_media":2436,"comment_status":"closed","ping_status":"open","sticky":true,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[812],"tags":[495,462,258,60,496,497,498,55,137,71,126],"class_list":["post-2437","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-alianzas-e-instituciones","tag-a-t-global-alliance","tag-a-t-society","tag-action-for-a-t","tag-aefat","tag-alianza-internacional","tag-anat","tag-at-society","tag-ataxia-telangiectasia","tag-la-opinion-de-malaga","tag-malaga","tag-tapones-solidarios"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.2 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>La Alianza Internacional crece - 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=\"La Alianza Internacional crece - Aefat\" \/>\n<meta property=\"og:description\" content=\"\u00a1Juntos somos m\u00e1s fuertes! Queremos dar la bienvenida a la asociaci\u00f3n italiana ANAT (Associazione Nazionale Atassia Telangiectasia), que se ha unido a la A-T Global Alliance para impulsar la investigaci\u00f3n de la ataxia telangiectasia y buscar recursos para mejorar la atenci\u00f3n a los pacientes con esta enfermedad rara, gen\u00e9tica y neurodegenerativa que a\u00fan no tiene cura. ANAT agrupa a unas 50 familias y est\u00e1 financiando varios proyectos de investigaci\u00f3n. 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