{"id":5566,"date":"2025-11-30T20:26:03","date_gmt":"2025-11-30T20:26:03","guid":{"rendered":"https:\/\/alianzapacientes.org\/?p=5566"},"modified":"2026-01-15T15:17:20","modified_gmt":"2026-01-15T15:17:20","slug":"ley-epof-en-la-ciudad-de-buenos-aires","status":"publish","type":"post","link":"https:\/\/www.marianakirby.com\/alapa\/2025\/11\/30\/ley-epof-en-la-ciudad-de-buenos-aires\/","title":{"rendered":"Ley EPOF en la Ciudad de Buenos Aires"},"content":{"rendered":"

Por primera vez se vot\u00f3 en la Legislatura de la Ciudad de Buenos Aires una Ley para garantizar el cuidado integral y protecci\u00f3n de los derechos de las personas con EPOF, con el fin de mejorar su calidad de vida y la de sus familias.<\/p>\n

 <\/p>\n

Todo comenz\u00f3 cuando en el a\u00f1o 2021<\/strong>, la Alianza Argentina de Pacientes – ALAPA<\/strong> se reuni\u00f3 con la diputada Dra. Claudia Neira<\/strong> en la Legislatura Porte\u00f1a para pedir que, en sinton\u00eda con la Ley Nacional 26.689<\/strong>, los hospitales dependientes del Ministerio de Salud del Gobierno de la Ciudad de Buenos Aires empezar\u00e1n a definir cu\u00e1les ser\u00edan Centro de Referencia<\/strong> de cada una de las patolog\u00edas de baja prevalencia que fueran empezando a aparecer en CABA.<\/p>\n

 <\/p>\n

\"Centro
Centro de Referencia en el Hospital Fern\u00e1ndez<\/figcaption><\/figure>\n

 <\/p>\n

La diputada Caludia Neira invit\u00f3 a participar en el armado de este proyecto al diputado Juan Pablo O\u2019Dezaille<\/strong>. Fueron muchas reuniones con los grupos de pacientes miembros de ALAPA hasta llegar al d\u00eda de hoy.<\/p>\n

 <\/p>\n

Esta ley, que llev\u00f3 la firma de Claudia Neira (presidenta del Bloque Uni\u00f3n por la Patria en la Ciudad) y de Juan Pablo O\u2019Dezaille, tuvo el acompa\u00f1amiento mayoritario de las bancadas oficialistas y opositoras<\/strong>. Lleg\u00f3 a la \u00faltima sesi\u00f3n del a\u00f1o con un amplio consenso que permitir\u00e1, entre otras cuestiones, crear un Registro centralizado de personas con EPOF<\/strong>,\u00a0 habilita un Consejo de participaci\u00f3n con organizaciones de la sociedad civil, la Defensor\u00eda del Pueblo, asociaciones de pacientes y familiares con EPOF y otras instituciones.<\/p>\n

 <\/p>\n

Si bien hay mucho por profundizar y trabajar respecto a esta cuesti\u00f3n, la votaci\u00f3n de la Ley permitir\u00e1 a much\u00edsimas familias contar con diagn\u00f3sticos, estudios e investigaciones de car\u00e1cter cient\u00edficos por parte del Estado de la Ciudad.<\/p>\n","protected":false},"excerpt":{"rendered":"

Por primera vez se vot\u00f3 en la Legislatura de la Ciudad de Buenos Aires una Ley para garantizar el cuidado integral y protecci\u00f3n de los derechos de las personas con EPOF, con el fin de mejorar su calidad de vida y la de sus familias.   Todo comenz\u00f3 cuando en el a\u00f1o 2021, la Alianza […]<\/p>\n","protected":false},"author":1,"featured_media":7418,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_joinchat":[],"footnotes":""},"categories":[7],"tags":[],"class_list":["post-5566","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-enfermedades-poco-frecuentes"],"yoast_head":"\nLey EPOF en la Ciudad de Buenos Aires - Alianza Argentina de Pacientes - ALAPA<\/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:\/\/www.marianakirby.com\/alapa\/2025\/11\/30\/ley-epof-en-la-ciudad-de-buenos-aires\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Ley EPOF en la Ciudad de Buenos Aires - 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