{"id":103006,"date":"2025-11-14T18:52:36","date_gmt":"2025-11-14T23:52:36","guid":{"rendered":"https:\/\/staging6.uniguajira.edu.co\/?p=103006"},"modified":"2026-01-20T15:48:14","modified_gmt":"2026-01-20T20:48:14","slug":"primer-foro-de-enfermedades-huerfanas-promueve-el-cuidado-integral-y-la-inclusion-en-la-guajira","status":"publish","type":"post","link":"https:\/\/staging6.uniguajira.edu.co\/wa\/actualidad\/primer-foro-de-enfermedades-huerfanas-promueve-el-cuidado-integral-y-la-inclusion-en-la-guajira\/","title":{"rendered":"Primer Foro de Enfermedades Hu\u00e9rfanas promueve el cuidado integral y la inclusi\u00f3n en La Guajira"},"content":{"rendered":"<div class=\"gb-container gb-container-6c51936b alignfull\">\n<div class=\"gb-container gb-container-2ca77d73\">\n<div class=\"gb-container gb-container-9ca4849d grid-bg\">\n<figure class=\"gb-block-image gb-block-image-005f491b\"><img loading=\"lazy\" decoding=\"async\" width=\"1920\" height=\"1080\" src=\"https:\/\/staging6.uniguajira.edu.co\/wp-content\/uploads\/2025\/11\/Primer-Foro-de-Enfermedades-Huerfanas-promueve-el-cuidado-integral-y-la-inclusion-en-La-Guajira.webp\" class=\"gb-image-005f491b imgt neumo\" alt=\"Grupo de profesionales y representantes institucionales posan juntos frente a un cartel del foro sobre apoyo integral a personas con discapacidad en La Guajira.\" srcset=\"https:\/\/staging6.uniguajira.edu.co\/wp-content\/uploads\/2025\/11\/Primer-Foro-de-Enfermedades-Huerfanas-promueve-el-cuidado-integral-y-la-inclusion-en-La-Guajira.webp 1920w, https:\/\/staging6.uniguajira.edu.co\/wp-content\/uploads\/2025\/11\/Primer-Foro-de-Enfermedades-Huerfanas-promueve-el-cuidado-integral-y-la-inclusion-en-La-Guajira-300x169.webp 300w, https:\/\/staging6.uniguajira.edu.co\/wp-content\/uploads\/2025\/11\/Primer-Foro-de-Enfermedades-Huerfanas-promueve-el-cuidado-integral-y-la-inclusion-en-La-Guajira-1024x576.webp 1024w, https:\/\/staging6.uniguajira.edu.co\/wp-content\/uploads\/2025\/11\/Primer-Foro-de-Enfermedades-Huerfanas-promueve-el-cuidado-integral-y-la-inclusion-en-La-Guajira-768x432.webp 768w, https:\/\/staging6.uniguajira.edu.co\/wp-content\/uploads\/2025\/11\/Primer-Foro-de-Enfermedades-Huerfanas-promueve-el-cuidado-integral-y-la-inclusion-en-La-Guajira-1536x864.webp 1536w, https:\/\/staging6.uniguajira.edu.co\/wp-content\/uploads\/2025\/11\/Primer-Foro-de-Enfermedades-Huerfanas-promueve-el-cuidado-integral-y-la-inclusion-en-La-Guajira-18x10.webp 18w, https:\/\/staging6.uniguajira.edu.co\/wp-content\/uploads\/2025\/11\/Primer-Foro-de-Enfermedades-Huerfanas-promueve-el-cuidado-integral-y-la-inclusion-en-La-Guajira-500x281.webp 500w, https:\/\/staging6.uniguajira.edu.co\/wp-content\/uploads\/2025\/11\/Primer-Foro-de-Enfermedades-Huerfanas-promueve-el-cuidado-integral-y-la-inclusion-en-La-Guajira-800x450.webp 800w, https:\/\/staging6.uniguajira.edu.co\/wp-content\/uploads\/2025\/11\/Primer-Foro-de-Enfermedades-Huerfanas-promueve-el-cuidado-integral-y-la-inclusion-en-La-Guajira-1280x720.webp 1280w\" sizes=\"auto, (max-width: 1920px) 100vw, 1920px\" \/><\/figure>\n<\/div>\n\n<div class=\"gb-container gb-container-8053cac9\">\n\n<p class=\"wp-block-paragraph\">La Biblioteca H\u00e9ctor Salah Zuleta fue escenario del Primer Foro de Enfermedades Hu\u00e9rfanas, Cuidado y Discapacidad, organizado por la Universidad de La Guajira. Este encuentro se consolid\u00f3 como un espacio de di\u00e1logo, reflexi\u00f3n y construcci\u00f3n colectiva orientado a promover el reconocimiento, la inclusi\u00f3n y la atenci\u00f3n integral de las personas afectadas y de sus cuidadores.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">La jornada reuni\u00f3 a diversas entidades, entre ellas la Secretar\u00eda de Salud Departamental, la Fundaci\u00f3n Gabriel de Jes\u00fas, el Instituto Colombiano de Bienestar Familiar (ICBF), la Asociaci\u00f3n Colombiana de Gen\u00e9tica Humana, la Di\u00f3cesis de Riohacha, la Canciller\u00eda y el Centro Int\u00e9grate Riohacha, con el prop\u00f3sito de compartir experiencias y buenas pr\u00e1cticas orientadas a mejorar la calidad de vida de las personas con condiciones de salud poco comunes. Sus aportes fueron claves para visibilizar la situaci\u00f3n actual de las personas con discapacidad y las barreras que enfrentan en el acceso a los servicios de salud, educaci\u00f3n y protecci\u00f3n social.&nbsp;<\/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\">Estefany Pati\u00f1o Hern\u00e1ndez, directora de la Fundaci\u00f3n Gabriel de Jes\u00fas, resalt\u00f3 el valor del trabajo colaborativo entre diferentes organismos que suman esfuerzos por esta causa: \u201cUniguajira ha fortalecido de manera contundente el acompa\u00f1amiento hacia nuestra poblaci\u00f3n, no solo en Riohacha sino en todo el departamento. Lo m\u00e1s valioso ha sido la articulaci\u00f3n de organizaciones que hoy conforman una mesa de atenci\u00f3n y gesti\u00f3n hacia las personas con enfermedades raras y sus familias\u201d, afirm\u00f3.<\/p>\n<\/blockquote>\n\n<\/div>\n\n<div class=\"gb-container gb-container-72342e13 grid-bg\">\n\n<figure class=\"gb-block-image gb-block-image-bf0f204e\"><img loading=\"lazy\" decoding=\"async\" width=\"1920\" height=\"1080\" class=\"gb-image gb-image-bf0f204e imgt\" src=\"https:\/\/staging6.uniguajira.edu.co\/wp-content\/uploads\/2025\/11\/Gabriell-de-Jesus-Mindiola-Patino-y-Shirley-Paola-Alarcon-Solano-participantes-del-Foro-de-Enfermedades-Huerfanas-Cuidado-y-Prevencion.-.webp\" alt=\"Dos participantes j\u00f3venes en silla de ruedas sonr\u00eden durante un encuentro sobre discapacidad y enfermedades hu\u00e9rfanas.\" title=\"Gabriell de Jesus Mindiola Patin\u0303o y Shirley Paola Alarcon Solano, participantes del Foro de Enfermedades Hue\u0301rfanas, Cuidado y Prevencio\u0301n.\" srcset=\"https:\/\/staging6.uniguajira.edu.co\/wp-content\/uploads\/2025\/11\/Gabriell-de-Jesus-Mindiola-Patino-y-Shirley-Paola-Alarcon-Solano-participantes-del-Foro-de-Enfermedades-Huerfanas-Cuidado-y-Prevencion.-.webp 1920w, https:\/\/staging6.uniguajira.edu.co\/wp-content\/uploads\/2025\/11\/Gabriell-de-Jesus-Mindiola-Patino-y-Shirley-Paola-Alarcon-Solano-participantes-del-Foro-de-Enfermedades-Huerfanas-Cuidado-y-Prevencion.--300x169.webp 300w, https:\/\/staging6.uniguajira.edu.co\/wp-content\/uploads\/2025\/11\/Gabriell-de-Jesus-Mindiola-Patino-y-Shirley-Paola-Alarcon-Solano-participantes-del-Foro-de-Enfermedades-Huerfanas-Cuidado-y-Prevencion.--1024x576.webp 1024w, https:\/\/staging6.uniguajira.edu.co\/wp-content\/uploads\/2025\/11\/Gabriell-de-Jesus-Mindiola-Patino-y-Shirley-Paola-Alarcon-Solano-participantes-del-Foro-de-Enfermedades-Huerfanas-Cuidado-y-Prevencion.--768x432.webp 768w, https:\/\/staging6.uniguajira.edu.co\/wp-content\/uploads\/2025\/11\/Gabriell-de-Jesus-Mindiola-Patino-y-Shirley-Paola-Alarcon-Solano-participantes-del-Foro-de-Enfermedades-Huerfanas-Cuidado-y-Prevencion.--1536x864.webp 1536w, https:\/\/staging6.uniguajira.edu.co\/wp-content\/uploads\/2025\/11\/Gabriell-de-Jesus-Mindiola-Patino-y-Shirley-Paola-Alarcon-Solano-participantes-del-Foro-de-Enfermedades-Huerfanas-Cuidado-y-Prevencion.--18x10.webp 18w, https:\/\/staging6.uniguajira.edu.co\/wp-content\/uploads\/2025\/11\/Gabriell-de-Jesus-Mindiola-Patino-y-Shirley-Paola-Alarcon-Solano-participantes-del-Foro-de-Enfermedades-Huerfanas-Cuidado-y-Prevencion.--500x281.webp 500w, https:\/\/staging6.uniguajira.edu.co\/wp-content\/uploads\/2025\/11\/Gabriell-de-Jesus-Mindiola-Patino-y-Shirley-Paola-Alarcon-Solano-participantes-del-Foro-de-Enfermedades-Huerfanas-Cuidado-y-Prevencion.--800x450.webp 800w, https:\/\/staging6.uniguajira.edu.co\/wp-content\/uploads\/2025\/11\/Gabriell-de-Jesus-Mindiola-Patino-y-Shirley-Paola-Alarcon-Solano-participantes-del-Foro-de-Enfermedades-Huerfanas-Cuidado-y-Prevencion.--1280x720.webp 1280w\" sizes=\"auto, (max-width: 1920px) 100vw, 1920px\" \/>\n<figcaption class=\"gb-headline gb-headline-998ea3b2 gb-headline-text\"><strong>Gabriell de Jesus Mindiola Pati\u00f1o y Shirley Paola Alarcon Solano, participantes del Foro de Enfermedades Hu\u00e9rfanas, Cuidado y Prevenci\u00f3n.\u00a0<\/strong><\/figcaption>\n<\/figure>\n\n<\/div>\n\n<div class=\"gb-container gb-container-b862291b\">\n\n<p class=\"wp-block-paragraph\">Por su parte, Cristian Javier Fong Reales, bi\u00f3logo de la Asociaci\u00f3n Colombiana de Gen\u00e9tica Humana, resalt\u00f3 que: \u201ceste foro es muy satisfactorio porque permite dar a conocer un grupo de patolog\u00edas que muchas veces son invisibles desde el punto de vista institucional. Generar espacios donde se hable de la cotidianidad de los pacientes es clave para desarrollar pol\u00edticas p\u00fablicas que respondan a sus realidades.\u201d<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Esta actividad se realiz\u00f3 en el marco del proyecto de extensi\u00f3n Implementaci\u00f3n de ruta de atenci\u00f3n y servicio inclusivo para cuidadores y personas con discapacidad del Distrito de Riohacha, liderado por la docente Lorna Blanco del Programa de Licenciatura en M\u00fasica de la Universidad de La Guajira. El proyecto ha llegado a distintos corregimientos del distrito con actividades deportivas, l\u00fadicas y recreativas, as\u00ed como talleres enfocados en la salud mental y al fortalecimiento de quienes brindan apoyo y acompa\u00f1amiento a esta poblaci\u00f3n.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Con estos encuentros, nuestra Alma M\u00e1ter reafirma su compromiso con la inclusi\u00f3n, la equidad y el bienestar de las comunidades del territorio guajiro, al generar espacios de reflexi\u00f3n y sensibilizaci\u00f3n que contribuyan a una sociedad m\u00e1s justa y solidaria.<\/p>\n\n\n\n<p class=\"gb-headline gb-headline-9879d82d\"><span class=\"gb-icon\"><svg aria-hidden=\"true\" role=\"img\" height=\"1em\" width=\"1em\" viewBox=\"0 0 496 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path fill=\"currentColor\" d=\"M248 8C111 8 0 119 0 256s111 248 248 248 248-111 248-248S385 8 248 8zm0 96c48.6 0 88 39.4 88 88s-39.4 88-88 88-88-39.4-88-88 39.4-88 88-88zm0 344c-58.7 0-111.3-26.6-146.5-68.2 18.8-35.4 55.6-59.8 98.5-59.8 2.4 0 4.8.4 7.1 1.1 13 4.2 26.6 6.9 40.9 6.9 14.3 0 28-2.7 40.9-6.9 2.3-.7 4.7-1.1 7.1-1.1 42.9 0 79.7 24.4 98.5 59.8C359.3 421.4 306.7 448 248 448z\"><\/path><\/svg><\/span><span class=\"gb-headline-text\"><strong>Ang\u00e9lica Mar\u00eda P\u00e9rez Vega&nbsp;<\/strong><\/span><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Periodista Uniguajira<\/p>\n\n\n<div class=\"gb-container gb-container-c838accb\">\n\n<a class=\"gb-button gb-button-aa4f0539\" href=\"https:\/\/uniguajira.musvc2.net\/e\/tr?q=8%3dFV6WHZ%26n%3dV%263%3dWBaJ%26G%3d9VKYBe%260%3d0vO5K_tvhr_5f_7sUu_Gh_tvhr_4ksJkQt.9qJvDg.84E_tvhr_4ksJkQt_JSxe_THA4Df07K_tvhr_4kF_fxD4iRW_V8QwVohZYjgwqAMLL3LjjDY_MfuR_XUMuK_7sUu_HfuCpJkIv%266%3doP8NeW.37v%26D8%3dSBeMX%26vN%3dGb4ZFS3YFaBYOX%26j%3dbGWAd6p3cub5Zt63WG556NS9dra9aLS88tX5ZIT4eLadVra7Ar68YK79bJ5dXuYeXp3e&amp;mupckp=mupAtu4m8OiX0wt\" target=\"_blank\" rel=\"noopener noreferrer\" aria-label=\"Haz clic aqu\u00ed para escuchar los audios\"><span class=\"gb-icon\"><svg fill=\"#e8eaed\" width=\"24px\" viewBox=\"0 -960 960 960\" height=\"24px\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M40-480v-80h80v80H40Zm800 0v-80h80v80h-80ZM40-640v-80h80v80H40Zm800 0v-80h80v80h-80ZM40-800v-80h80v80H40Zm160 320v-80h80v80h-80Zm480 0v-80h80v80h-80Zm160-320v-80h80v80h-80Zm-640 0v-80h80v80h-80Zm160 0v-80h80v80h-80Zm160 0v-80h80v80h-80Zm160 0v-80h80v80h-80ZM473-40q-24 0-46-9t-39-26L184-280l33-34q14-14 34-19t40 0l69 20v-327q0-17 11.5-28.5T400-680q17 0 28.5 11.5T440-640v433l-98-28 103 103q6 6 13 9t15 3h167q33 0 56.5-23.5T720-200v-160q0-17 11.5-28.5T760-400q17 0 28.5 11.5T800-360v160q0 66-47 113T640-40H473Zm7-280v-160q0-17 11.5-28.5T520-520q17 0 28.5 11.5T560-480v160h-80Zm120 0v-120q0-17 11.5-28.5T640-480q17 0 28.5 11.5T680-440v120h-80Zm40 200H445h195Z\"><\/path><\/svg><\/span><span class=\"gb-button-text\">Haz clic aqu\u00ed para escuchar los audios<\/span><\/a>\n\n<\/div>\n<\/div>\n\n<div class=\"gb-container gb-container-e5d3f760\">\n<div class=\"gb-grid-wrapper gb-grid-wrapper-056fd3bf\">\n<div class=\"gb-grid-column gb-grid-column-1df61138\"><div class=\"gb-container gb-container-1df61138\">\n\n<figure class=\"wp-block-image size-full is-resized\"><img loading=\"lazy\" decoding=\"async\" width=\"100\" height=\"149\" src=\"https:\/\/staging6.uniguajira.edu.co\/wp-content\/uploads\/2023\/12\/logo-uniguajira-seo-e1712295827787.webp\" alt=\"logo uniguajira seo\" class=\"wp-image-8\" style=\"width:72px;height:auto\"\/><\/figure>\n\n<\/div><\/div>\n\n<div class=\"gb-grid-column gb-grid-column-9a85a803\"><div class=\"gb-container gb-container-9a85a803\">\n\n<div class=\"gb-headline gb-headline-8e81e1b3 gb-headline-text\"><strong>Fecha de publicaci\u00f3n:<\/strong><\/div>\n\n\n<div class=\"gb-headline gb-headline-90b56892 gb-headline-text\"><time class=\"entry-date published\" datetime=\"2025-11-14T18:52:36-05:00\">14 November, 2025<\/time><\/div>\n\n<div class=\"gb-container gb-container-87357360\">\n\n<div class=\"gb-headline gb-headline-00448a79 gb-headline-text\"><strong>Autor:<\/strong><\/div>\n\n\n\n<div class=\"gb-headline gb-headline-f95b9cd2 gb-headline-text\">Universidad de La Guajira<\/div>\n\n<\/div>\n\n\n<p class=\"gb-headline gb-headline-5c054874 gb-headline-text\">Unidos por una Uniguajira Acreditada, Inclusiva e Innovadora<\/p>\n\n\n\n<a class=\"gb-button gb-button-a3117df6\" href=\"https:\/\/twitter.com\/UniLaGuajira\" target=\"_blank\" rel=\"noopener noreferrer\"><span class=\"gb-icon\"><svg aria-hidden=\"true\" role=\"img\" height=\"1em\" width=\"1em\" viewBox=\"0 0 512 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path fill=\"currentColor\" d=\"M389.2 48h70.6L305.6 224.2 487 464H345L233.7 318.6 106.5 464H35.8L200.7 275.5 26.8 48H172.4L272.9 180.9 389.2 48zM364.4 421.8h39.1L151.1 88h-42L364.4 421.8z\"><\/path><\/svg><\/span><\/a>\n\n\n\n<a class=\"gb-button gb-button-8edb8f54\" href=\"https:\/\/www.facebook.com\/UniLaGuajira\/\" target=\"_blank\" rel=\"noopener noreferrer\"><span class=\"gb-icon\"><svg aria-hidden=\"true\" role=\"img\" height=\"1em\" width=\"1em\" viewBox=\"0 0 512 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path fill=\"currentColor\" d=\"M504 256C504 119 393 8 256 8S8 119 8 256c0 123.78 90.69 226.38 209.25 245V327.69h-63V256h63v-54.64c0-62.15 37-96.48 93.67-96.48 27.14 0 55.52 4.84 55.52 4.84v61h-31.28c-30.8 0-40.41 19.12-40.41 38.73V256h68.78l-11 71.69h-57.78V501C413.31 482.38 504 379.78 504 256z\"><\/path><\/svg><\/span><\/a>\n\n\n\n<a class=\"gb-button gb-button-6d6739fe\" href=\"https:\/\/www.instagram.com\/uniguajira_\/\" target=\"_blank\" rel=\"noopener noreferrer\"><span class=\"gb-icon\"><svg aria-hidden=\"true\" role=\"img\" height=\"1em\" width=\"1em\" viewBox=\"0 0 448 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path fill=\"currentColor\" d=\"M224.1 141c-63.6 0-114.9 51.3-114.9 114.9s51.3 114.9 114.9 114.9S339 319.5 339 255.9 287.7 141 224.1 141zm0 189.6c-41.1 0-74.7-33.5-74.7-74.7s33.5-74.7 74.7-74.7 74.7 33.5 74.7 74.7-33.6 74.7-74.7 74.7zm146.4-194.3c0 14.9-12 26.8-26.8 26.8-14.9 0-26.8-12-26.8-26.8s12-26.8 26.8-26.8 26.8 12 26.8 26.8zm76.1 27.2c-1.7-35.9-9.9-67.7-36.2-93.9-26.2-26.2-58-34.4-93.9-36.2-37-2.1-147.9-2.1-184.9 0-35.8 1.7-67.6 9.9-93.9 36.1s-34.4 58-36.2 93.9c-2.1 37-2.1 147.9 0 184.9 1.7 35.9 9.9 67.7 36.2 93.9s58 34.4 93.9 36.2c37 2.1 147.9 2.1 184.9 0 35.9-1.7 67.7-9.9 93.9-36.2 26.2-26.2 34.4-58 36.2-93.9 2.1-37 2.1-147.8 0-184.8zM398.8 388c-7.8 19.6-22.9 34.7-42.6 42.6-29.5 11.7-99.5 9-132.1 9s-102.7 2.6-132.1-9c-19.6-7.8-34.7-22.9-42.6-42.6-11.7-29.5-9-99.5-9-132.1s-2.6-102.7 9-132.1c7.8-19.6 22.9-34.7 42.6-42.6 29.5-11.7 99.5-9 132.1-9s102.7-2.6 132.1 9c19.6 7.8 34.7 22.9 42.6 42.6 11.7 29.5 9 99.5 9 132.1s2.7 102.7-9 132.1z\"><\/path><\/svg><\/span><\/a>\n\n\n\n<a class=\"gb-button gb-button-da3f5fe9\" href=\"https:\/\/www.youtube.com\/user\/UniLaGuajira\" target=\"_blank\" rel=\"noopener noreferrer\"><span 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