{"id":118249,"identifier":"637088865944a305bf229fff280f82069f67acdce3022cb01b185d135db5c149","request_date":"2024-04-17 20:20:56","date":"2024-04-12 15:00:00","duration_minutes":null,"publish_date":"2024-04-17 20:51:56","published_by":null,"status":"PUBLICADA","summary":"El encuentro inici\u00f3 con una breve presentaci\u00f3n de cada participante y su rol en la audiencia. La Red proporcion\u00f3 una s\u00edntesis de las actividades y objetivos de la misma. Esta Red agrupa a familias de todo el pa\u00eds con el fin de garantizar una mejor calidad de vida y acceso a la atenci\u00f3n m\u00e9dica integral para sus hijos e hijas con esta enfermedad endocrinol\u00f3gica, la cual provoca un desarrollo prematuro con consecuencias tanto f\u00edsicas como emocionales. La Red manifest\u00f3 la urgencia de la reglamentaci\u00f3n de la Ley 27.732, compartiendo su perspectiva y propuesta para la misma.  Adem\u00e1s, se hizo hincapi\u00e9 en el costo elevado del tratamiento, el cual consiste en la administraci\u00f3n de inyecciones para normalizar el ritmo de crecimiento. Ambos funcionarios se comprometieron a mantener el contacto con la Red y transmitir lo tratado en el encuentro al gabinete.\nComo l\u00edneas de acci\u00f3n futuras se propuso la creaci\u00f3n de una mesa participativa que involucre a todos los actores relevantes en la tem\u00e1tica.","motif":"Reglamentaci\u00f3n de la Ley 27.732","interest_type":"DIFUSO","place":"Despacho, Ministerio de Salud de la Naci\u00f3n","address":"Av. 9 de julio 1925","type":"PRESENCIAL","obligee_id":76661,"applicant_id":119199,"author_id":417,"dependency_id":6489,"has_participants":true,"document_reference":null,"active":true,"deleted_by":null,"deleted_reason":null,"created_at":"2024-04-17 20:20:56","updated_at":"2024-04-17 20:51:56","deleted_at":null,"participants_count":6,"local_date":"2024-04-12","local_time":"15:00","obligee":{"id":76661,"dependency_id":6489,"dependency_name":"Subsecretar\u00eda de Relaciones Sectoriales y Articulaci\u00f3n, Secretar\u00eda de Acceso y Equidad en Salud, Unidad Ministro de Salud, Ministerio de Salud","active":false,"position":"Subsecretaria","created_at":"2024-01-29T20:52:31.000000Z","updated_at":"2024-10-21T19:35:13.000000Z","deleted_at":null,"person":{"id":214190,"name":"Zingoni, Paula Lorena","country":"Argentina","document":"24829035","email":null,"telephone":null,"gender":null},"dependency":{"id":6489,"name":"Subsecretar\u00eda de Relaciones Sectoriales y Articulaci\u00f3n"}},"dependency":{"id":6489,"name":"Subsecretar\u00eda de Relaciones Sectoriales y Articulaci\u00f3n"},"applicant":{"id":119199,"audience_id":118249,"email":null,"telephone":null,"occupation":"REFERENTE NACIONAL Y ASESORA  DE LA RED-REFERENTE OSECAC","present":true,"absent":false,"applicant_type":"ARGENTINO","applicant_country":null,"representation_type":"REPRESENTACION","represented_entity":{"entity_type":"people_groups","entity_id":1050,"entity_name":"Red de pubertad precoz"},"interest_type":null,"active":true,"created_at":"2024-04-17T23:20:56.000000Z","updated_at":"2024-04-17T23:30:43.000000Z","deleted_at":null,"person":{"id":215661,"name":"Reyno Analia Veronica","country":"Argentina","document":"26079119","email":null,"telephone":null,"gender":null}},"participants":[{"id":139820,"audience_id":118249,"occupation":"","present":true,"created_at":"2024-04-17T23:26:00.000000Z","updated_at":"2024-04-17T23:26:00.000000Z","person":{"id":215662,"name":"Pedrozo Sciara Maria Celeste","country":"Argentina","document":"36093490","email":null,"telephone":null,"gender":null}},{"id":139821,"audience_id":118249,"occupation":"","present":true,"created_at":"2024-04-17T23:26:08.000000Z","updated_at":"2024-04-17T23:26:08.000000Z","person":{"id":215663,"name":"Cabrera Vilma Leonor","country":"Argentina","document":"24306560","email":null,"telephone":null,"gender":null}},{"id":139822,"audience_id":118249,"occupation":"","present":true,"created_at":"2024-04-17T23:26:23.000000Z","updated_at":"2024-04-17T23:26:23.000000Z","person":{"id":215664,"name":"Gomez Karina Elizabeth","country":"Argentina","document":"29186095","email":null,"telephone":null,"gender":null}},{"id":139823,"audience_id":118249,"occupation":"","present":true,"created_at":"2024-04-17T23:26:36.000000Z","updated_at":"2024-04-17T23:26:36.000000Z","person":{"id":215665,"name":"Enriquez Carlos Emanuel","country":"Argentina","document":"33999180","email":null,"telephone":null,"gender":null}},{"id":139829,"audience_id":118249,"occupation":"","present":true,"created_at":"2024-04-17T23:40:46.000000Z","updated_at":"2024-04-17T23:40:46.000000Z","person":{"id":215667,"name":"Szathmary Esteban Ariel","country":"Argentina","document":"17936741","email":null,"telephone":null,"gender":null}},{"id":139830,"audience_id":118249,"occupation":"","present":true,"created_at":"2024-04-17T23:42:41.000000Z","updated_at":"2024-04-17T23:42:41.000000Z","person":{"id":215668,"name":"Agudin Lara","country":"Argentina","document":"41717124","email":null,"telephone":null,"gender":null}}],"files":[]}