{"id":27656,"date":"2014-09-22T18:06:19","date_gmt":"2014-09-22T22:06:19","guid":{"rendered":"https:\/\/nephcure.org\/nephcure-in-the-news\/"},"modified":"2024-05-01T16:29:46","modified_gmt":"2024-05-01T20:29:46","slug":"nephcure-en-las-noticias","status":"publish","type":"post","link":"https:\/\/nephcure.org\/es\/nephcure-in-the-news\/","title":{"rendered":"NephCure en las noticias"},"content":{"rendered":"

PatientCrossroads lanza nuevos registros de pacientes<\/h3>\n
Los nuevos registros de enfermedades raras surgieron del programa piloto del Registro Global de Enfermedades Raras (GRDR) de los NIH
\nSan Mateo, California (PRWEB) 4 de septiembre de 2014<\/address>\n

PatientCrossroads anuncia el lanzamiento de cinco nuevos registros de pacientes en nombre de las principales organizaciones de defensa de enfermedades raras. Los nuevos registros est\u00e1n patrocinados por organizaciones seleccionadas originalmente por los NIH para participar en su programa piloto de Registro y Repositorio Global de Enfermedades Raras (GRDR). Se lanzan cinco nuevos registros de pacientes a trav\u00e9s del programa PatientCrossroads: la Fundaci\u00f3n del S\u00edndrome de Barth, la Fundaci\u00f3n para la Investigaci\u00f3n de la Sarcoidosis, la Linfangiomatosis y la Alianza para la Enfermedad de Gorhams, Red renal NephCure<\/strong> y los registros de Socios que buscan una cura de PSC (colangitis esclerosante primaria) se han lanzado utilizando la plataforma de registro PatientCrossroads. Leer m\u00e1s>><\/a><\/p>\n

'Una joven poco com\u00fan': a pesar de su enfermedad, la ni\u00f1a maneja la vida como una campeona<\/h3>\n

Por Isaac Groves \/ Times-News<\/em>
\nPublicado: mi\u00e9rcoles 10 de septiembre de 2014 a las 17:31.<\/em><\/p>\n

\"brandi-chrisp\"<\/a>GRAHAM \u2014 A los 6 a\u00f1os, Brandi Chrisp es una ni\u00f1a vivaz, dulce, inteligente, habladora y atrevida, sin un hueso t\u00edmido en su cuerpo y, honestamente, una de las ni\u00f1as m\u00e1s lindas que jam\u00e1s hayas conocido.<\/p>\n

\u201cMe gusta mucho tocar y cantar\u201d, dijo. \u201cY lo que m\u00e1s me gusta es salir a comer con mi familia\u201d.<\/p>\n

Tambi\u00e9n ha sido hospitalizada varias veces durante el \u00faltimo a\u00f1o por un raro problema renal, y ella y su familia est\u00e1n recaudando dinero para financiar investigaciones que ayuden a personas como ella.<\/p>\n

\u201cTengo s\u00edndrome nefr\u00f3tico\u201d, dijo. \u00a0Leer m\u00e1s>><\/a><\/p>\n

Los partidarios de Iowa-ISU se postulan por el derecho a fanfarronear y la caridad<\/h3>\n

Publicado en l\u00ednea: 10 de septiembre de 2014, 9:39 p. m.<\/em><\/p>\n

Aproximadamente 100 participantes, la mayor\u00eda como parte de equipos de relevos, correr\u00e1n una ruta de 125 millas desde Ames hasta Iowa City a partir de hoy, 10 de septiembre, y finalizar\u00e1n ma\u00f1ana. Adem\u00e1s del aspecto de los derechos de fanfarronear, el evento tambi\u00e9n sirve para recaudar fondos en beneficio de NephCure Kidney International. \u00a0Leer m\u00e1s>><\/a><\/p>\n

'Tenemos un largo camino por delante'<\/h3>\n
Un ni\u00f1o de 10 a\u00f1os de Union vive con una rara enfermedad renal
\nPublicado: mi\u00e9rcoles, 17 de septiembre de 2014 6:32 pm
\nPor Karen Cernich, escritora<\/address>\n

\"bradleyscott\"<\/a>Sentado en el piso de la sala de su casa en Union, construyendo un auto de juguete con Legos, Bradley Scott parece un ni\u00f1o promedio de 10 a\u00f1os, pero para los m\u00e9dicos que lo tratan por la rara enfermedad renal FSGS, es una especie de misterio m\u00e9dico.<\/p>\n

"Ha estado reescribiendo los libros de medicina desde que era un beb\u00e9", coment\u00f3 la madre de Bradley, Amanda Scott. "Creo que todos los especialistas que hemos visto dicen que est\u00e1n reescribiendo los libros de medicina". \u00a0Leer m\u00e1s>><\/a><\/p>\n

La empresa de mejoras para el hogar del norte de VA apoya las escuelas p\u00fablicas del condado de Fairfax<\/h3>\n
PRWeb | 20 de septiembre de 2014<\/address>\n

Moss Building and Design, una empresa de remodelaci\u00f3n de propiedad familiar en el condado de Fairfax, siempre est\u00e1 buscando formas de retribuir a la comunidad en la que trabajan y viven. Retribuir a la comunidad local es un objetivo importante de la empresa de remodelaci\u00f3n cuyos esfuerzos incluyen la escuela patrocinios como una de las muchas formas en que retribuyen.<\/p>\n

La participaci\u00f3n comunitaria de Moss tambi\u00e9n incluye el patrocinio de torneos de golf locales, el apoyo a la fundaci\u00f3n local NephCure, la construcci\u00f3n de la estructura de la casa embrujada para Bradley Farm Haunted House e incluso la reconstrucci\u00f3n del techo de los refugios en Chantilly Park para Chantilly Little League. \u00a0Leer m\u00e1s>><\/a><\/p>","protected":false},"excerpt":{"rendered":"

PatientCrossroads lanza nuevos registros de pacientes Los nuevos registros de enfermedades raras surgieron del programa piloto del Registro Global de Enfermedades Raras (GRDR) de los NIH San Mateo, California (PRWEB) 04 de septiembre de 2014 PatientCrossroads anuncia el... Leer m\u00e1s<\/a><\/p>","protected":false},"author":222,"featured_media":27659,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"inline_featured_image":false,"footnotes":""},"categories":[354],"tags":[358],"disease-category":[],"resource-type":[260],"treatment-option":[],"hf_cat_post":[],"class_list":["post-27656","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-recent-news","tag-nephcure-kidney-international","resource-type-news"],"acf":[],"yoast_head":"\nNephCure in the News - NephCure<\/title>\n<meta name=\"description\" content=\"PatientCrossroads Launches New Patient Registries The new rare-disease registries arose from the NIH Global Rare Diseases Registry (GRDR) pilot program - Read more about NephCure in the News on NephCure.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/nephcure.org\/es\/nephcure-en-las-noticias\/\" \/>\n<meta property=\"og:locale\" content=\"es_MX\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"NephCure in the News\" \/>\n<meta property=\"og:description\" content=\"PatientCrossroads Launches New Patient Registries The new rare-disease registries arose from the NIH Global Rare Diseases Registry (GRDR) pilot program - 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