{"id":28191,"date":"2023-07-24T16:11:19","date_gmt":"2023-07-24T20:11:19","guid":{"rendered":"https:\/\/nephcure.org\/2023-rare-kidneys-on-the-hill-day-success-largest-event-in-organization-history\/"},"modified":"2024-05-01T16:28:18","modified_gmt":"2024-05-01T20:28:18","slug":"2023-el-evento-mas-grande-del-exito-del-dia-de-rinones-raros-en-la-colina-en-la-historia-de-la-organizacion","status":"publish","type":"post","link":"https:\/\/nephcure.org\/es\/2023-rare-kidneys-on-the-hill-day-success-largest-event-in-organization-history\/","title":{"rendered":"2023 \u00c9xito del d\u00eda de Rare Kidneys on the Hill, el evento m\u00e1s grande en la historia de la organizaci\u00f3n"},"content":{"rendered":"<p style=\"font-weight: 400;\">El 12 de julio, NephCure<em>\u00a0<\/em>organiz\u00f3 su <strong>Ri\u00f1ones raros en el d\u00eda de la colina<\/strong> para crear conciencia y abogar por cambios legislativos para mejorar las vidas de los pacientes con enfermedades renales raras (ERK) y sus familias. El evento incluy\u00f3 reuniones con miembros del Congreso y personal legislativo, una sesi\u00f3n informativa en persona para el Congreso sobre las prioridades e iniciativas pol\u00edticas de NephCure y oportunidades para establecer contactos para los pacientes y sus familias. <strong>Sesenta y un defensores de 20 estados<\/strong> viaj\u00f3 a Washington, DC para participar en el vuelo anual, marcando el <strong>El mayor d\u00eda en persona de NephCure Hill hasta la fecha<\/strong>.<\/p>\n<p><iframe title=\"Ri\u00f1ones raros en el d\u00eda de la colina | Lo m\u00e1s destacado del d\u00eda de NephCure Hill\" width=\"1200\" height=\"675\" src=\"https:\/\/www.youtube.com\/embed\/8svfXHnN3Jg?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe><\/p>\n<p style=\"font-weight: 400;\">El Hill Day de NephCure estuvo precedido por una <strong>Cena de rally<\/strong> el 11 de julio, donde los defensores <span class=\"ui-provider fz b c d e f g h i j k l m n o p q r s t u v w x y z ab ac ae af ag ah ai aj ak\" dir=\"ltr\">se reunieron para prepararse para sus reuniones del Congreso, aprender sobre las prioridades pol\u00edticas urgentes que afectan a la comunidad de enfermedades raras y compartir historias sobre lo que los inspira a defender<\/span>. Durante la cena, NephCure present\u00f3 el <strong>Abogado del a\u00f1o<\/strong> premio a Kimberly Queen, una paciente de RKD y defensora de Georgia.<\/p>\n<p style=\"font-weight: 400;\">Al d\u00eda siguiente, los defensores y el personal de NephCure llevaron a cabo <strong>m\u00e1s de 70 reuniones presenciales<\/strong> con personal de las oficinas del Congreso en la C\u00e1mara de Representantes y el Senado de los EE. UU., incluidas las oficinas de <strong>Senadora Tammy Baldwin (D-WI), Senador Bob Casey (D-PA), Senador Bill Cassidy (R-LA), Senadora Patty Murray (D-WA), Senador Tim Scott (R-SC), La senadora Debbie Stabenow (D-MI), el senador Jon Tester (D-MT), la senadora Elizabeth Warren (D-MA), el representante Gus Bilirakis (R-FL, 12), la representante Lisa Blunt Rochester (D- DE, AL), el representante Larry Bucshon (R-IN, 08), la representante Suzan Delbene (D-WA, 01) y la representante Teri Sewell (D-AL, 07)<\/strong>.<\/p>\n<p style=\"font-weight: 400;\">Durante el Hill Day, NephCure tambi\u00e9n organiz\u00f3 una <strong>sesi\u00f3n informativa del Congreso sobre la Ley de Nueva Era para la Prevenci\u00f3n de la Enfermedad Renal en Etapa Terminal<\/strong>, proyecto de ley que se espera sea reintroducido en el Congreso en un futuro pr\u00f3ximo. La sesi\u00f3n informativa cubri\u00f3 informaci\u00f3n sobre el papel \u00fanico desempe\u00f1ado por NephCure al unir a las partes interesadas en la enfermedad renal para encontrar tratamientos y curas para la RKD, la prevalencia, el impacto en los pacientes y el costo significativo de la enfermedad renal, y c\u00f3mo la Ley de la Nueva Era mejorar\u00e1 el estado de la atenci\u00f3n renal. En Am\u00e9rica. NephCure est\u00e1 trabajando en estrecha colaboraci\u00f3n con las oficinas defensoras de la C\u00e1mara en la reintroducci\u00f3n de la Ley de la Nueva Era.<\/p>\n<p>\u201cAhora estamos en un punto en el que el costo de no tratar la enfermedad renal es m\u00e1s caro que tratar la enfermedad. No dejemos que 22 a\u00f1os de ciencia e investigaci\u00f3n se desperdicien por falta de acceso\u201d, afirm\u00f3 Joshua Tarnoff, director ejecutivo de NephCure.<\/p>\n<p style=\"font-weight: 400;\">El evento de una hora de duraci\u00f3n fue moderado por Joshua Tarnoff, director ejecutivo de NephCure, e incluy\u00f3 presentaciones de las siguientes personas:<\/p>\n<ul style=\"font-weight: 400;\">\n<li><strong>kelly tim\u00f3n\u00a0<\/strong>| Director ejecutivo de participaci\u00f3n del paciente, NephCure<\/li>\n<li><strong>Laura Mariani, MD\u00a0<\/strong>| Universidad de Michigan, Divisi\u00f3n de Nefrolog\u00eda<\/li>\n<li><strong>colleen blanco\u00a0<\/strong>| Asistente Legislativo de Salud, Oficina del Representante Gus Bilirakis (R-FL, 12)<\/li>\n<li><strong>Imani Mintz\u00a0<\/strong>| Paciente de RKD y voluntario de NephCure<\/li>\n<li><strong>Beca Garc\u00eda <\/strong>| Cuidadora de Bria, su hija que tiene RKD<\/li>\n<\/ul>\n<p><a href=\"https:\/\/www.youtube.com\/watch?v=GK697GAAsxI\" target=\"_blank\" rel=\"noopener\">Puede ver la sesi\u00f3n informativa del Congreso aqu\u00ed.<\/a><\/p>\n<p><span class=\"ui-provider fz b c d e f g h i j k l m n o p q r s t u v w x y z ab ac ae af ag ah ai aj ak\" dir=\"ltr\">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.<\/span><\/p>\n<p>El apoyo a Rare Kidneys on the Hill Day 2023 de NephCure fue brindado generosamente por 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<p><a href=\"https:\/\/photos.app.goo.gl\/bp9MmXVydmaZqwke8\" target=\"_blank\" rel=\"noopener\">Vea todas las fotos de nuestro D\u00eda de Ri\u00f1ones Raros en la Colina aqu\u00ed.<\/a><\/p>","protected":false},"excerpt":{"rendered":"<p>El 12 de julio, NephCure organiz\u00f3 su Rare Kidneys on the Hill Day para crear conciencia y abogar por cambios legislativos para mejorar las vidas de los pacientes con enfermedades renales raras (RKD) y... <a title=\"2023 \u00c9xito del d\u00eda de Rare Kidneys on the Hill, el evento m\u00e1s grande en la historia de la organizaci\u00f3n\" class=\"read-more\" href=\"https:\/\/nephcure.org\/es\/2023-rare-kidneys-on-the-hill-day-success-largest-event-in-organization-history\/\" aria-label=\"Leer m\u00e1s sobre 2023 \u00c9xito del D\u00eda de Rare Kidneys on the Hill, el evento m\u00e1s grande en la historia de la organizaci\u00f3n\">Leer m\u00e1s<\/a><\/p>","protected":false},"author":222,"featured_media":28192,"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-28191","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-recent-news","resource-type-news"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v27.9 (Yoast SEO v28.0) - 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