{"id":28185,"date":"2023-07-06T15:50:07","date_gmt":"2023-07-06T19:50:07","guid":{"rendered":"https:\/\/nephcure.org\/nephcure-to-host-largest-rare-kidneys-on-the-hill-day\/"},"modified":"2024-05-01T16:28:18","modified_gmt":"2024-05-01T20:28:18","slug":"nephcure-albergara-los-rinones-raros-mas-grandes-el-dia-de-la-colina","status":"publish","type":"post","link":"https:\/\/nephcure.org\/es\/nephcure-to-host-largest-rare-kidneys-on-the-hill-day\/","title":{"rendered":"NephCure albergar\u00e1 los ri\u00f1ones raros m\u00e1s grandes en el d\u00eda de la colina"},"content":{"rendered":"

Proyecto de ley sobre enfermedades renales raras a punto de ser reintroducido<\/h4>\n

KING OF PRUSSIA, Pa. (6 DE JULIO DE 2023)\u2014 Sesenta y cinco pacientes y cuidadores de enfermedades renales raras (ERK) viajar\u00e1n desde 21 estados a Washington, DC la pr\u00f3xima semana para participar en la conferencia anual de NephCure. Ri\u00f1ones raros en el d\u00eda de la colina<\/a>, marcando la mayor asistencia en persona hasta la fecha para el evento. Los d\u00edas 11 y 12 de julio, estos defensores se reunir\u00e1n con sus miembros del Congreso para presionar por m\u00e1s fondos para la investigaci\u00f3n, diagn\u00f3sticos mejorados y un mayor acceso a innovaciones en tratamientos y atenci\u00f3n. La principal petici\u00f3n de los defensores ser\u00e1 la de pedir apoyo a la Ley de nueva era para la prevenci\u00f3n de la enfermedad renal terminal<\/a>, proyecto de ley que se espera sea reintroducido en el Congreso en un futuro pr\u00f3ximo.<\/p>\n

"Nos sentimos honrados de contar con un n\u00famero r\u00e9cord de pacientes y familias este a\u00f1o", afirm\u00f3 Josh Tarnoff, director ejecutivo de NephCure. \u201cCompartir sus historias personales con sus representantes en el Congreso es fundamental para realizar cambios de pol\u00edticas que mejoren la atenci\u00f3n a los pacientes con enfermedades renales raras. La voz del paciente es vital para nuestros esfuerzos como comunidad\u201d.<\/p>\n

El D\u00eda de Rare Kidneys on the Hill comienza el 11 de julio con una cena de manifestaci\u00f3n, que brinda a los participantes la oportunidad de conectarse con otros defensores de RKD y practicar para sus reuniones.<\/p>\n

Al d\u00eda siguiente, 12 de julio, los participantes se reunir\u00e1n con miembros de la C\u00e1mara de Representantes y el Senado para establecer relaciones y educar a los miembros sobre cuestiones de enfermedades renales raras. Adem\u00e1s, los participantes asistir\u00e1n a una sesi\u00f3n informativa del Congreso y a un almuerzo dise\u00f1ado para educar a los miembros y su personal sobre cuestiones del RKD.<\/p>\n

Un enfoque principal durante las reuniones de defensores ser\u00e1 instar a apoyar la Ley de Nueva Era para la Prevenci\u00f3n de la Enfermedad Renal en Etapa Terminal. El proyecto de ley fue desarrollado en colaboraci\u00f3n con partes interesadas en enfermedades renales raras y presentado en el 117\u00ba Congreso. Aprovechando el impulso del Congreso anterior, se espera que el proyecto de ley se vuelva a presentar en este Congreso y ser\u00e1 dirigido por defensores clave del Congreso.<\/p>\n

El proyecto de ley mejorar\u00eda, desarrollar\u00eda y brindar\u00eda servicios de atenci\u00f3n m\u00e9dica a personas con enfermedades renales raras mediante el apoyo a la investigaci\u00f3n y la promoci\u00f3n de protocolos de diagn\u00f3stico e intervenci\u00f3n temprana; abordar las disparidades de salud en las comunidades rurales y desproporcionadamente afectadas; y mejorar la educaci\u00f3n de los proveedores. Juntas, estas intervenciones mejorar\u00e1n los resultados de salud renal y reducir\u00e1n los costos de di\u00e1lisis y trasplante. El gobierno de Estados Unidos gasta $130 mil millones anualmente en pacientes con enfermedad renal, casi una cuarta parte del presupuesto total de Medicare.<\/p>\n

Otro la pol\u00edtica pregunta<\/a> Las propuestas de los defensores incluir\u00e1n lo siguiente: aumentar la financiaci\u00f3n de los NIH y los CDC para la investigaci\u00f3n m\u00e9dica y las actividades de educaci\u00f3n y concientizaci\u00f3n, continuar incluyendo la glomeruloesclerosis focal y segmentaria y el s\u00edndrome nefr\u00f3tico en la financiaci\u00f3n de la investigaci\u00f3n de defensa, copatrocinar la Ley de Protecci\u00f3n de Donantes Vivos de 2023 HR 2923\/S. 1384, copatrocina la Ley de Paso Seguro, HR 2630\/ S. 652, y copatrocina la Ley de Copagos HELP HR 830\/S. 1375.<\/p>\n

NephCure desarrolla la programaci\u00f3n y las prioridades pol\u00edticas de Rare Kidneys on the Hill Day de acuerdo con su misi\u00f3n y en colaboraci\u00f3n con la comunidad de pacientes.<\/p>\n

El apoyo a Rare Kidneys on the Hill Day 2023 de NephCure lo brindan generosamente los patrocinadores platino Calliditas Therapeutics, Novartis y Travere Therapeutics, los patrocinadores plateados Boehringer Ingelheim, Chinook Therapeutics y Vertex, y el patrocinador bronce, Otsuka.<\/p>\n

Se anima a todos los miembros de la comunidad de enfermedades renales raras a participar desde casa durante toda la semana siguiendo a @NephCure y compartiendo sus historias de RKD utilizando #RKDWeek2023.<\/p>\n

Para obtener m\u00e1s informaci\u00f3n sobre el D\u00eda de los Ri\u00f1ones Raros en la Colina de NephCure, visite resources.nephcure.org\/hillday2023<\/a>.<\/p>\n

Acerca de NephCure:<\/strong><\/p>\n

La misi\u00f3n de NephCure es capacitar a las personas con una enfermedad renal rara que derrama prote\u00ednas para que se hagan cargo de su salud y, al mismo tiempo, lideran la revoluci\u00f3n en investigaci\u00f3n, nuevos tratamientos y atenci\u00f3n. Fundada en 2000 por un grupo de padres pacientes comprometidos, NephCure ha invertido m\u00e1s de $40 millones en la investigaci\u00f3n de enfermedades renales y ha ayudado a crear un panorama en el que ahora existen nuevos tratamientos y m\u00e1s de 60 ensayos de medicamentos intervencionistas para enfermedades renales raras. NephCure es una organizaci\u00f3n ben\u00e9fica p\u00fablica 501(c)(3) exenta de impuestos en EE. UU.<\/p>","protected":false},"excerpt":{"rendered":"

Proyecto de ley sobre enfermedades renales raras a punto de ser reintroducido REY DE PRUSIA, Pensilvania (6 DE JULIO DE 2023)\u2014 Sesenta y cinco pacientes y cuidadores de enfermedades renales raras (RKD) viajan desde 21 estados a Washington,... Leer m\u00e1s<\/a><\/p>","protected":false},"author":222,"featured_media":26494,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"inline_featured_image":false,"footnotes":""},"categories":[354],"tags":[],"disease-category":[],"resource-type":[260],"treatment-option":[],"hf_cat_post":[538],"class_list":["post-28185","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-recent-news","resource-type-news"],"acf":[],"yoast_head":"\nNephCure to Host Largest Rare Kidneys on the Hill Day - NephCure<\/title>\n<meta name=\"description\" content=\"Rare kidney disease bill poised to be reintroduced KING OF PRUSSIA, Pa. 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