{"id":33851,"date":"2024-09-03T08:00:00","date_gmt":"2024-09-03T12:00:00","guid":{"rendered":"https:\/\/nephcure.org\/?p=33851"},"modified":"2024-10-01T12:37:18","modified_gmt":"2024-10-01T16:37:18","slug":"la-fda-otorga-a-fabhalta-la-aprobacion-acelerada-para-el-tratamiento-de-la-nefropatia-por-iga-en-adultos-3","status":"publish","type":"post","link":"https:\/\/nephcure.org\/es\/nephcure-announces-first-ever-iga-nephropathy-igan-awareness-day-on-september-26-2024\/","title":{"rendered":"NephCure anuncia el primer D\u00eda de Concientizaci\u00f3n sobre la Nefropat\u00eda por IgA (NIgA) el 26 de septiembre de 2024\u00a0"},"content":{"rendered":"

3 de septiembre de 2024:<\/strong> \u2013 NephCure, una organizaci\u00f3n l\u00edder sin fines de lucro dedicada a encontrar mejores tratamientos y una cura para la enfermedad renal rara, se enorgullece de anunciar el D\u00eda inaugural de concientizaci\u00f3n sobre la nefropat\u00eda por IgA (IgAN) el 26 de septiembre de 2024. El evento est\u00e1 dedicado espec\u00edficamente a generar conciencia sobre la nefropat\u00eda por IgA, una enfermedad renal rara y a menudo "silenciosa". <\/p>\n\n\n\n

Este d\u00eda marca un hito importante para la comunidad IgAN, ya que NephCure tiene como objetivo arrojar luz sobre esta condici\u00f3n poco reconocida, promover la importancia del diagn\u00f3stico temprano y el tratamiento proactivo y brindar recursos cruciales para los afectados. <\/p>\n\n\n\n

La IgAN, tambi\u00e9n conocida como enfermedad de Berger, es una afecci\u00f3n renal que provoca inflamaci\u00f3n en las unidades de filtrado del ri\u00f1\u00f3n, lo que puede provocar da\u00f1o renal e incluso insuficiencia renal. Durante muchos a\u00f1os, la IgAN ha sido un adversario silencioso, que a menudo progresa sin ser detectado debido a la falta de s\u00edntomas reconocibles. Sin embargo, el panorama del tratamiento de la IgAN est\u00e1 cambiando, ya que ahora hay nuevas opciones de tratamiento aprobadas por la FDA que ofrecen esperanza a los pacientes al ayudar a preservar la funci\u00f3n renal y potencialmente retrasar o prevenir la necesidad de di\u00e1lisis o trasplante. <\/p>\n\n\n\n

<\/p>\n\n\n\n

Entendiendo el proceso de IgAN<\/strong>
Para coincidir con el D\u00eda de Concientizaci\u00f3n sobre la IgAN, NephCure est\u00e1 lanzando una poderosa campa\u00f1a digital titulada \u201cSilencioso pero serio: comprender la nefropat\u00eda por IgA\u201d. Esta campa\u00f1a contar\u00e1 con historias conmovedoras de cuatro pacientes con IgAN que han enfrentado los desaf\u00edos de esta afecci\u00f3n, as\u00ed como varios recursos educativos y opciones de apoyo diferentes.<\/p>\n\n\n\n

<\/p>\n\n\n\n

\u00danase a nosotros en el ayuntamiento del D\u00eda de Concientizaci\u00f3n sobre IgAN<\/strong> 
En el marco de los actos del d\u00eda de concientizaci\u00f3n del 26 de septiembreth<\/sup>NephCure organizar\u00e1 un evento virtual gratuito de sensibilizaci\u00f3n sobre la IgAN a las 7:30 p. m., hora del este de EE. UU. Este evento enriquecedor y motivador reunir\u00e1 a pacientes, cuidadores y profesionales m\u00e9dicos para analizar los \u00faltimos avances en el tratamiento de la IgAN, compartir testimonios de pacientes y brindar informaci\u00f3n sobre el nuevo Programa de asistencia para pacientes con IgAN. Invitamos a todas las personas afectadas por la IgAN a unirse a esta importante conversaci\u00f3n. Para registrarse en el seminario web, haga clic aqu\u00ed<\/a>. <\/p>\n\n\n\n

<\/p>\n\n\n\n

Por qu\u00e9 es importante la concienciaci\u00f3n sobre la IgAN<\/strong> 
La nefropat\u00eda por IgA suele pasar desapercibida en sus primeras etapas, y hasta el 40% de los pacientes no presentan s\u00edntomas reconocibles en el momento del diagn\u00f3stico. A pesar de su progresi\u00f3n lenta, existe una creciente urgencia por tratar la IgAN, ya que incluso los pacientes con niveles m\u00e1s bajos de prote\u00edna en la orina (proteinuria) corren el riesgo de progresar a enfermedad renal en etapa terminal (ESKD). NephCure se dedica a proporcionar las herramientas y los recursos necesarios para que los pacientes se hagan cargo de su salud, incluido el Manual del paciente con IgA recientemente publicado, que ofrece una gu\u00eda completa para comprender y controlar la enfermedad. <\/p>\n\n\n\n

El Manual del paciente con NIgA tambi\u00e9n ofrece consejos pr\u00e1cticos para gestionar la vida diaria con NIgA, como valiosos consejos diet\u00e9ticos, ajustes en el estilo de vida y estrategias de comunicaci\u00f3n eficaces con los proveedores de atenci\u00f3n m\u00e9dica. Para descargar este recurso, haga clic aqu\u00ed<\/a>. <\/p>\n\n\n\n

NephCure agradece a nuestros generosos patrocinadores, Travere Therapeutics, Alexion y Calliditas Therapeutics por apoyar este evento y hacer posible el D\u00eda de Concientizaci\u00f3n sobre IgAN.  <\/p>\n\n\n\n

Para obtener m\u00e1s informaci\u00f3n sobre el D\u00eda de Concientizaci\u00f3n sobre IgAN, registrarse para el ayuntamiento o descargar el Manual del Paciente de IgAN, haga clic aqu\u00ed.<\/a><\/p>\n\n\n\n

<\/p>\n\n\n\n

Acerca de NephCure: <\/strong>
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 estadounidense exenta de impuestos 501(c)(3). <\/p>\n\n\n

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Patrocinadores<\/strong><\/h3>\n\n\n
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<\/div><\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>","protected":false},"excerpt":{"rendered":"

3 de septiembre de 2024: \u2013 NephCure, una organizaci\u00f3n sin fines de lucro l\u00edder dedicada a encontrar mejores tratamientos y una cura para la enfermedad renal rara, se enorgullece de anunciar la primera conferencia sobre nefropat\u00eda por IgA (IgAN)\u2026 Leer m\u00e1s<\/a><\/p>","protected":false},"author":12083,"featured_media":33760,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"inline_featured_image":false,"footnotes":""},"categories":[300],"tags":[675],"disease-category":[255],"resource-type":[260],"treatment-option":[],"hf_cat_post":[537],"class_list":["post-33851","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-press-release","tag-igan-awareness-day","disease-category-iga-nephropathy-igan","resource-type-news"],"acf":[],"yoast_head":"\nNephCure Announces First-Ever IgA Nephropathy (IgAN) Awareness Day on September 26, 2024\u00a0 - NephCure<\/title>\n<meta name=\"description\" content=\"NephCure announced the first-ever IgA Nephropathy (IgAN) Awareness Day. 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