{"id":2372,"date":"2021-04-07T09:50:55","date_gmt":"2021-04-07T09:50:55","guid":{"rendered":"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/index.php\/2021\/04\/07\/primera-web-internacional-ataxia-telangiectasia\/"},"modified":"2026-03-02T12:01:29","modified_gmt":"2026-03-02T12:01:29","slug":"primera-web-internacional-ataxia-telangiectasia","status":"publish","type":"post","link":"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/index.php\/2021\/04\/07\/primera-web-internacional-ataxia-telangiectasia\/","title":{"rendered":"Lanzamos la primera web internacional sobre la ataxia telangiectasia"},"content":{"rendered":"

\"ATLa pandemia causada por la Covid-19 ha perjudicado a muchas asociaciones de pacientes con enfermedades raras, que han visto reducidas sus posibilidades de recaudar fondos para investigar, pero del confinamiento tambi\u00e9n han salido iniciativas positivas<\/strong>. Ante la imposibilidad de organizar congresos presenciales o reunirse para colaborar, cinco asociaciones relacionadas con la ataxia telangiectasia<\/strong> (AT) en distintos pa\u00edses se han reunido por videoconferencia desde el inicio de la pandemia para buscar nuevas posibilidades de colaborar a nivel internacional, ante los obst\u00e1culos que impone el virus.<\/p>\n

Y fruto de esa colaboraci\u00f3n ha surgido www.cureat.org<\/a>, <\/strong>la primera web internacional sobre la ataxia telangiectasia.<\/strong><\/p>\n

Como sab\u00e9is, la AT es una enfermedad rara, gen\u00e9tica y neurodegenerativa que a\u00fan no tiene cura, y que provoca una discapacidad progresiva, inmunodeficiencia, problemas respiratorios, dificultad en el habla y m\u00e1s posibilidad de tener c\u00e1ncer, entre otras complicaciones. Los enfermos son plenamente conscientes de su enfermedad, ya que no afecta a sus facultades mentales.<\/p>\n

Action for A-T<\/a><\/strong>, A-T Society<\/a><\/strong> (ambas de Reino Unido), BrAshA-T<\/a><\/strong> (Australia), Aefat<\/a><\/strong> (Espa\u00f1a) y  A-T Children’s Project<\/a><\/strong> (Estados Unidos) lideran esta Alianza Global AT<\/strong> de la que ha surgido la web. Pretende reunir en una sola p\u00e1gina toda la informaci\u00f3n m\u00e1s importante sobre la ataxia telangiectasia: proyectos de investigaci\u00f3n y ensayos cl\u00ednicos, atenci\u00f3n al paciente, registros, posibilidades de colaboraci\u00f3n, eventos y congresos, etc. La p\u00e1gina, disponible de momento en ingl\u00e9s y en espa\u00f1ol, tambi\u00e9n incluye enlaces a cada una de las casi 20 asociaciones que existen en diferentes pa\u00edses.<\/p>\n

La Alianza Global AT busca facilitar la informaci\u00f3n sobre la ataxia telangiectasia a investigadores, profesionales sanitarios, afectados y familias<\/strong>, y generar una mayor comunicaci\u00f3n entre los diferentes grupos. El objetivo es avanzar m\u00e1s r\u00e1pido en la b\u00fasqueda de una cura, o al menos encontrar tratamientos y terapias que minimicen los efectos de esta enfermedad degenerativa y permitan una mejor calidad de vida para los afectados. En su mayor\u00eda son ni\u00f1os y j\u00f3venes menores de 20 a\u00f1os. En Aefat se agrupan las familias de unos 30 afectados en Espa\u00f1a.<\/p>\n

Las diferentes asociaciones de familias ya se unieron en noviembre para lanzar por primera vez una campa\u00f1a internacional conjunta de sensibilizaci\u00f3n<\/strong>, en distintos idiomas, para explicar en qu\u00e9 consiste la ataxia telangiectasia. En el v\u00eddeo<\/a><\/strong> participaron familias de diferentes pa\u00edses y diez asociaciones de pacientes.<\/p>\n","protected":false},"excerpt":{"rendered":"

\"ATLa pandemia causada por la Covid-19 ha perjudicado a muchas asociaciones de pacientes con enfermedades raras, que han visto reducidas sus posibilidades de recaudar fondos para investigar, pero del confinamiento tambi\u00e9n han salido iniciativas positivas<\/strong>. Ante la imposibilidad de organizar congresos presenciales o reunirse para colaborar, cinco asociaciones relacionadas con la ataxia telangiectasia<\/strong> (AT) en distintos pa\u00edses se han reunido por videoconferencia desde el inicio de la pandemia para buscar nuevas posibilidades de colaborar a nivel internacional, ante los obst\u00e1culos que impone el virus.<\/p>\n

Y fruto de esa colaboraci\u00f3n ha surgido www.cureat.org<\/a>, <\/strong>la primera web internacional sobre la ataxia telangiectasia.<\/strong><\/p>\n","protected":false},"author":1,"featured_media":2371,"comment_status":"closed","ping_status":"open","sticky":true,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[808],"tags":[207,199,278,163,62,116,208,64,323,428,436],"class_list":["post-2372","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-divulgacion-y-medios","tag-alejandra","tag-alvaro","tag-ataxia-telangientasia","tag-barcelona","tag-enfermedades-raras","tag-investigacion","tag-luis-illan","tag-maraton","tag-rare-disease","tag-research","tag-web"],"acf":[],"yoast_head":"\nLanzamos la primera web internacional sobre la 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=\"Lanzamos la primera web internacional sobre la ataxia telangiectasia - Aefat\" \/>\n<meta property=\"og:description\" content=\"La pandemia causada por la Covid-19 ha perjudicado a muchas asociaciones de pacientes con enfermedades raras, que han visto reducidas sus posibilidades de recaudar fondos para investigar, pero del confinamiento tambi\u00e9n han salido iniciativas positivas. Ante la imposibilidad de organizar congresos presenciales o reunirse para colaborar, cinco asociaciones relacionadas con la ataxia telangiectasia (AT) en distintos pa\u00edses se han reunido por videoconferencia desde el inicio de la pandemia para buscar nuevas posibilidades de colaborar a nivel internacional, ante los obst\u00e1culos que impone el virus. 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