{"id":3320,"date":"2025-03-03T12:48:06","date_gmt":"2025-03-03T18:48:06","guid":{"rendered":"https:\/\/grupohoymexico.com\/hidalgohoy\/?p=3320"},"modified":"2025-03-03T12:57:57","modified_gmt":"2025-03-03T18:57:57","slug":"difh-conmemora-el-dia-mundial-de-las-enfermedades-raras","status":"publish","type":"post","link":"https:\/\/grupohoymexico.com\/hidalgo\/nacional\/estatal\/difh-conmemora-el-dia-mundial-de-las-enfermedades-raras\/","title":{"rendered":"DIFH conmemora el D\u00eda Mundial de las Enfermedades Raras"},"content":{"rendered":"\n<p class=\"wp-block-paragraph\">En el marco del <strong>D\u00eda Mundial de las Enfermedades Raras<\/strong>, el <strong>Sistema <a href=\"https:\/\/grupohoymexico.com\/hidalgohoy\/uncategorized\/difh-fortalece-el-autoempleo-y-certificacion-para-el-trabajo-en-hidalguenses\/\">DIF Hidalgo<\/a><\/strong>, encabezado por la presidenta del Patronato,<strong><a href=\"https:\/\/dif.hidalgo.gob.mx\/boletines\/boletin_77\/boletin_77.pdf\"> Edda Vite Ramos<\/a><\/strong>, realiz\u00f3 un foro en el que tres personas compartieron sus experiencias de vida con estas condiciones poco comunes. El evento destac\u00f3 la importancia de visibilizar estos padecimientos y reforzar los esfuerzos para brindar <strong>apoyo integral <\/strong>a los<strong> pacientes<\/strong> y sus familias.  <\/p>\n\n\n\n<figure class=\"wp-block-image size-full\"><img fetchpriority=\"high\" decoding=\"async\" width=\"780\" height=\"470\" src=\"https:\/\/grupohoymexico.com\/wp-content\/uploads\/sites\/5\/2025\/03\/image-4.png\" alt=\"\" class=\"wp-image-3321\" srcset=\"https:\/\/grupohoymexico.com\/hidalgo\/wp-content\/uploads\/sites\/5\/2025\/03\/image-4.png 780w, https:\/\/grupohoymexico.com\/hidalgo\/wp-content\/uploads\/sites\/5\/2025\/03\/image-4-300x181.png 300w, https:\/\/grupohoymexico.com\/hidalgo\/wp-content\/uploads\/sites\/5\/2025\/03\/image-4-768x463.png 768w, https:\/\/grupohoymexico.com\/hidalgo\/wp-content\/uploads\/sites\/5\/2025\/03\/image-4-400x240.png 400w\" sizes=\"(max-width: 780px) 100vw, 780px\" \/><\/figure>\n\n\n\n<h3 class=\"wp-block-heading\"><br>DIFH comparte conferencia de las Enfermedades raras <\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">Como parte de la jornada, la genetista <strong>Ana Cecilia Jara Ettinger<\/strong> imparti\u00f3 la conferencia &#8220;\u00bfConoces las Enfermedades Raras?&#8221;, en la que explic\u00f3 los principales desaf\u00edos en el <strong>diagn\u00f3stico <\/strong>y <strong>tratamiento<\/strong>, subrayando la relevancia de la detecci\u00f3n temprana para mejorar la <strong>calidad de vida<\/strong> de los afectados. <br><br>LEE TAMBI\u00c9N: <a href=\"https:\/\/grupohoymexico.com\/hidalgohoy\/uncategorized\/difh-fortalece-el-autoempleo-y-certificacion-para-el-trabajo-en-hidalguenses\/\">https:\/\/grupohoymexico.com\/hidalgohoy\/uncategorized\/difh-fortalece-el-autoempleo-y-certificacion-para-el-trabajo-en-hidalguenses\/<\/a><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Durante su intervenci\u00f3n, <strong>Edda Vite Ramos<\/strong> destac\u00f3 la labor de la <strong>Junta General de Asistencia<\/strong> (JUGA), dirigida por <strong>Oralia Vega<\/strong>, que coordina los esfuerzos de m\u00e1s de 130 organizaciones de asistencia social. <\/p>\n\n\n\n<blockquote class=\"wp-block-quote is-layout-flow wp-block-quote-is-layout-flow\">\n<p class=\"wp-block-paragraph\">&#8220;El trabajo en equipo es clave para garantizar que cada persona en situaci\u00f3n de vulnerabilidad reciba la ayuda que necesita&#8221;, enfatiz\u00f3.<\/p>\n<\/blockquote>\n\n\n\n<h3 class=\"wp-block-heading\">Testimonio en conferencia del DIFH <\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">Uno de los momentos m\u00e1s emotivos fue el testimonio de un padre sobre la lucha diaria de su hijo contra una <strong>enfermedad rara<\/strong>. En respuesta, la presidenta del <strong>DIF Hidalgo<\/strong> le otorg\u00f3 acceso inmediato al C\u00f3digo Ginda, garantizando atenci\u00f3n especializada sin costo en el <strong>Hospital del Ni\u00f1o DIF Hidalgo <\/strong>(HNDIFH).<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">En el evento participaron representantes de la <strong>Alianza por las Enfermedades Raras Hidalgo<\/strong>, conformada por organizaciones civiles como <strong>Craniosinostosis M\u00e9xico A.C<\/strong>, <strong>Fundaci\u00f3n Mar\u00eda Jos\u00e9 A.C<\/strong> y <strong>Fundaci\u00f3n Liam TC A.C. <\/strong>Adem\u00e1s, madres y padres de ni\u00f1os con enfermedades raras compartieron sus inquietudes y experiencias, y fueron parte del encendido de luces alusivas a la conmemoraci\u00f3n en la fachada del <strong>HNDIFH. <\/strong><br><\/p>\n\n\n\n<h3 class=\"wp-block-heading\">\u00bfQuienes acudieron a la convocatoria del DIFH?<\/h3>\n\n\n\n<p class=\"wp-block-paragraph\"> <br>La convocatoria cont\u00f3 con la presencia de <strong>Ricardo Alvizo<\/strong>, titular del <strong>Sistema Estatal<\/strong>; <strong>C\u00e9sar Guti\u00e9rrez<\/strong>, director del<strong> HNDIFH<\/strong>; <strong>H\u00e9ctor Villafuentes<\/strong>, director del <strong>Centro de Rehabilitaci\u00f3n Integral de Hidalgo<\/strong>, y<strong> Karina Ram\u00edrez<\/strong>, procuradora de <strong>Protecci\u00f3n a Ni\u00f1as, Ni\u00f1os, Adolescentes y la Familia. <\/strong>Tambi\u00e9n asistieron presidentas de los Sistemas Municipales DIF de <strong>Huejutla, Actopan <\/strong>y <strong>Tepeapulco<\/strong>, as\u00ed como estudiantes de la <strong>Universidad Aut\u00f3noma del Estado de Hidalgo<\/strong> (<strong>UAEH<\/strong>), el<strong> Colegio M\u00e9dico Hidalguense<\/strong>, la <strong>Universidad Polit\u00e9cnica de Pachuca y la Universidad Siglo XXI. <\/strong><\/p>\n\n\n\n<figure class=\"wp-block-image size-full\"><img decoding=\"async\" width=\"1024\" height=\"690\" src=\"https:\/\/grupohoymexico.com\/wp-content\/uploads\/sites\/5\/2025\/03\/image-5.png\" alt=\"\" class=\"wp-image-3322\" srcset=\"https:\/\/grupohoymexico.com\/hidalgo\/wp-content\/uploads\/sites\/5\/2025\/03\/image-5.png 1024w, https:\/\/grupohoymexico.com\/hidalgo\/wp-content\/uploads\/sites\/5\/2025\/03\/image-5-300x202.png 300w, https:\/\/grupohoymexico.com\/hidalgo\/wp-content\/uploads\/sites\/5\/2025\/03\/image-5-768x518.png 768w\" sizes=\"(max-width: 1024px) 100vw, 1024px\" \/><\/figure>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Con este<strong> foro<\/strong>, el <strong>Sistema DIF Hidalgo<\/strong> reafirma su compromiso con la <strong>salud y bienestar<\/strong> de las personas con<strong> enfermedades raras<\/strong>, promoviendo la<strong> inclusi\u00f3n<\/strong>, la empat\u00eda y el acceso a <strong>servicios m\u00e9dicos de calidad. <\/strong><\/p>\n","protected":false},"excerpt":{"rendered":"En el marco del D\u00eda Mundial de las Enfermedades Raras, el Sistema DIF Hidalgo, encabezado por la presidenta&hellip;","protected":false},"author":30,"featured_media":3324,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"csco_display_header_overlay":false,"csco_singular_sidebar":"","csco_page_header_type":"","csco_page_load_nextpost":"","csco_post_video_location":[],"csco_post_video_location_hash":"","csco_post_video_url":"","csco_post_video_bg_start_time":0,"csco_post_video_bg_end_time":0,"footnotes":""},"categories":[172],"tags":[534,234,533,190],"class_list":["post-3320","post","type-post","status-publish","format-standard","has-post-thumbnail","category-estatal","tag-dia-mundial-de-enfermedades-raras","tag-difh","tag-difh-enfermedades-raras","tag-hidalgo","cs-entry","cs-video-wrap"],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v24.7 (Yoast SEO v27.4) - https:\/\/yoast.com\/product\/yoast-seo-premium-wordpress\/ -->\n<title>DIFH 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