{"id":28129,"date":"2022-02-28T22:29:46","date_gmt":"2022-03-01T03:29:46","guid":{"rendered":"https:\/\/nephcure.org\/rare-disease-day-letter-from-the-ceo-josh-tarnoff\/"},"modified":"2024-05-01T16:28:29","modified_gmt":"2024-05-01T20:28:29","slug":"carta-del-director-ejecutivo-josh-tarnoff-sobre-el-dia-de-las-enfermedades-raras","status":"publish","type":"post","link":"https:\/\/nephcure.org\/es\/rare-disease-day-letter-from-the-ceo-josh-tarnoff\/","title":{"rendered":"D\u00eda de las Enfermedades Raras: Carta del director ejecutivo, Josh Tarnoff"},"content":{"rendered":"<p>Hoy es 28 de febrero <span style=\"color: #00a0af;\"><strong>D\u00eda de las Enfermedades Raras, un d\u00eda global de reconocimiento de las 7.000 enfermedades raras que enfrentan m\u00e1s de 300 millones de personas en todo el mundo.<\/strong> <\/span>Quer\u00eda aprovechar este d\u00eda como una oportunidad para compartir con ustedes m\u00e1s sobre los planes de NephCure para 2022 y c\u00f3mo continuaremos cambiando la historia de las enfermedades renales raras elevando y creando conciencia sobre estas enfermedades, apoyando a los pacientes y a las familias que luchan contra ellas. conect\u00e1ndolos con m\u00e9dicos que se especializan en sus afecciones y, despu\u00e9s de 20 a\u00f1os de apoyo a la investigaci\u00f3n, generando la primera ola de terapias que cambian las enfermedades.<\/p>\n<p><strong><span style=\"color: #00a0af;\">Nuestro enfoque en 2022:<\/span><\/strong><\/p>\n<ul>\n<li>Reuniones en persona<\/li>\n<li>Apoyo a la salud mental<\/li>\n<li>Las posibilidades de las pruebas gen\u00e9ticas<\/li>\n<li>Equidad en salud: acceso para todos<\/li>\n<li>Atenci\u00f3n experta de m\u00e9dicos de enfermedades raras<\/li>\n<\/ul>\n<p><span style=\"color: #00a0af;\"><strong>2022 es un a\u00f1o lleno de promesas y esperanzas renovadas para nuestras familias.<\/strong> <\/span>Despu\u00e9s de sufrir dos a\u00f1os de bloqueos inducidos por la pandemia, distanciamiento social y mayores medidas de mitigaci\u00f3n de riesgos, todos anhelamos una apariencia de normalidad. Estamos entusiasmados de ofrecer nuestra reuni\u00f3n anual en persona. <a href=\"https:\/\/resources.nephcure.org\/patient-summit-2022\">Cumbre de pacientes de NephCure<\/a> nuevamente este a\u00f1o, con m\u00e1s de 150 inscritos que se reunir\u00e1n con nosotros en Orlando. (Los asistentes tambi\u00e9n pueden <a href=\"https:\/\/resources.nephcure.org\/patient-summit-2022\">\u00fanete virtualmente<\/a>.) Durante todo el a\u00f1o, estaremos en nuestro <a href=\"https:\/\/nephcure.org\/es\/getinvolved\/nephcure-regional-communities\/\">Comunidades Regionales<\/a>, conect\u00e1ndonos cara a cara con voluntarios, nuevas familias y otras partes interesadas y forjando relaciones nuevas y m\u00e1s profundas con nuestros miembros de base de NephCure.<\/p>\n<p>El aislamiento social y el mayor estr\u00e9s de la pandemia para las personas con enfermedades cr\u00f3nicas e inmunodeprimidas tambi\u00e9n contin\u00faan poniendo en primer plano la importancia de la salud mental para nuestra comunidad. <span style=\"color: #00a0af;\"><strong>Mayo es el Mes de la Concientizaci\u00f3n sobre la Salud Mental y compartiremos programaci\u00f3n que subraya la lucha que enfrentan los pacientes postrasplante:<\/strong><\/span> vivir con un don y al mismo tiempo lidiar con los riesgos de una inmunosupresi\u00f3n de por vida o enfrentar la recurrencia de su enfermedad renal original en el nuevo \u00f3rgano. Tambi\u00e9n arrojaremos luz sobre la \u201cinvisibilidad\u201d de la enfermedad renal: muchos en los c\u00edrculos de pacientes no se dan cuenta de que est\u00e1n enfermos o no tienen motivos para tomar el diagn\u00f3stico en serio. La insuficiencia renal afectar\u00e1 todos los aspectos de su vida, como le dir\u00e1 cualquier persona en di\u00e1lisis.<\/p>\n<p><span style=\"color: #00a0af;\"><strong>Este a\u00f1o, tambi\u00e9n estamos entusiasmados con la promesa de lo que revelar\u00e1 una mayor conciencia y disponibilidad de oportunidades de pruebas gen\u00e9ticas y una mayor inversi\u00f3n en tratamientos de medicina de precisi\u00f3n y utilidad amplia.<\/strong><\/span> Los pacientes que no han respondido bien al tratamiento, los pacientes con enfermedad renal en su familia, especialmente los de ascendencia africana, y los pacientes en la lista de trasplantes y sus posibles donantes son excelentes candidatos para las pruebas gen\u00e9ticas. Y ahora, por primera vez, se est\u00e1n desarrollando medicamentos para mutaciones y v\u00edas gen\u00f3micas espec\u00edficas de la enfermedad renal. <span style=\"color: #00a0af;\"><strong>\u00bfQu\u00e9 significa esto para los pacientes? Significa que a medida que avance la investigaci\u00f3n, nuevos tratamientos ser\u00e1n m\u00e1s eficaces para usted y su enfermedad individual.<\/strong><\/span>, y que muchos de ellos no s\u00f3lo tratar\u00e1n sus s\u00edntomas, sino que realmente pueden cambiar el curso de su enfermedad. Anticipamos que, si tienen \u00e9xito, estos nuevos tratamientos dirigidos podr\u00edan comenzar a estar disponibles dentro de dos a\u00f1os.<\/p>\n<p><span style=\"color: #00a0af;\"><strong>NephCure est\u00e1 aqu\u00ed para poner nuevos y mejores tratamientos en manos de nuestros pacientes; es una parte clave de nuestra misi\u00f3n.<\/strong><\/span> Pero, \u00bfqu\u00e9 sucede cuando no todos los miembros de la comunidad est\u00e1n representados en los ensayos y las investigaciones? \u00bfQu\u00e9 pasar\u00e1 una vez que finalmente se aprueben nuevos tratamientos? Ahora que se est\u00e1 invirtiendo en nuevos tratamientos para enfermedades renales raras, <span style=\"color: #00a0af;\"><strong>Estamos muy concentrados en garantizar el acceso de todos a estos ensayos cl\u00ednicos, nuevos tratamientos potenciales y la atenci\u00f3n experta que nuestra comunidad de enfermedades requiere.<\/strong> <\/span>Hemos pasado los \u00faltimos a\u00f1os forjando asociaciones en comunidades de color que tienen un mayor riesgo de padecer una enfermedad renal rara, y estamos ansiosos por compartir nuestro trabajo conjunto de manera m\u00e1s amplia este a\u00f1o, con una mayor programaci\u00f3n, apoyo personalizado al paciente, y nuevas iniciativas de promoci\u00f3n gubernamental que apuntan a abordar las desigualdades fundamentales en la salud y el acceso a los ri\u00f1ones.<\/p>\n<p>Finalmente, y lo m\u00e1s importante si es paciente o cuidador de pacientes, en caso de que no se haya dado cuenta, <span style=\"color: #00a0af;\"><strong>Actualmente hay una ola de innovaci\u00f3n, nuevas investigaciones y nuevos tratamientos potenciales para enfermedades renales raras.<\/strong><\/span> Entonces, si su m\u00e9dico no le habla sobre ensayos o nuevos tratamientos, para ser franco: \u00a1necesita un nuevo m\u00e9dico! <span style=\"color: #00a0af;\"><strong>Hay demasiado disponible en este momento como para ignorar las posibilidades de los ensayos y otras innovaciones en la atenci\u00f3n.<\/strong> <\/span>Comun\u00edquese con nosotros para conectarse con un especialista de NephCure con antecedentes cl\u00ednicos espec\u00edficos e investigaciones sobre su enfermedad rara. Ellos podr\u00e1n brindarle la atenci\u00f3n m\u00e1s actualizada y las oportunidades de ensayos cl\u00ednicos.<\/p>\n<p>Espero verte en persona (\u00a1o en l\u00ednea!) este a\u00f1o y gracias por ser parte de esta comunidad.<\/p>\n<p>Atentamente,<\/p>\n<p>Josu\u00e9 Tarnoff<br \/>\nDirector ejecutivo<\/p>","protected":false},"excerpt":{"rendered":"<p>Hoy es 28 de febrero, D\u00eda de las Enfermedades Raras, un d\u00eda mundial de reconocimiento de las 7.000 enfermedades raras que enfrentan m\u00e1s de 300 millones de personas en todo el mundo. Quer\u00eda tomar esto... <a title=\"D\u00eda de las Enfermedades Raras: Carta del director ejecutivo, Josh Tarnoff\" class=\"read-more\" href=\"https:\/\/nephcure.org\/es\/rare-disease-day-letter-from-the-ceo-josh-tarnoff\/\" aria-label=\"Leer m\u00e1s sobre D\u00eda de las Enfermedades Raras: Carta del CEO, Josh Tarnoff\">Leer m\u00e1s<\/a><\/p>","protected":false},"author":222,"featured_media":28130,"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":[],"class_list":["post-28129","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) - https:\/\/yoast.com\/product\/yoast-seo-premium-wordpress\/ -->\n<title>Rare Disease Day: Letter from the CEO, Josh Tarnoff - NephCure<\/title>\n<meta name=\"description\" content=\"Today is February 28th, Rare Disease Day, a global day of recognition of the 7,000 rare diseases that more than 300 million people face worldwide. 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