{"id":139,"date":"2026-05-28T12:31:47","date_gmt":"2026-05-28T12:31:47","guid":{"rendered":"https:\/\/www.ultraconecta.com\/ar\/?page_id=139"},"modified":"2026-09-18T09:15:56","modified_gmt":"2026-09-18T09:15:56","slug":"comunidad-xlh","status":"publish","type":"page","link":"https:\/\/www.ultraconecta.com\/ar\/comunidad-xlh\/","title":{"rendered":"Comunidad xlh"},"content":{"rendered":"<p>  <main><\/p>\n<p>        <!-- ============================================================\n             COMMUNITY HERO \u2014 Intro text (left) + video card (right)\n             ============================================================ --><\/p>\n<section class=\"community-hero\">\n<div class=\"container\">\n<div class=\"community-hero__grid\">\n<p>                    <!-- Left: intro panel --><\/p>\n<div class=\"community-hero__intro\">\n<h1 class=\"community-hero__title\">COMUNIDAD XLH<\/h1>\n<p class=\"community-hero__text\">\n                                  XLH es una enfermedad poco frecuente, pero no est\u00e1s solo. <br \/>\nExisten organizaciones que pueden brindar informaci\u00f3n, recursos educativos y un espacio de comunidad a personas que conviven con XLH y sus familias.<\/p>\n<p class=\"community-hero__text\">\n                            Conoc\u00e9 algunas a continuaci\u00f3n\n                        <\/p>\n<\/p><\/div>\n<p>                    <!-- Right: video card --><br \/>\n                    <!-- \n\n<article class=\"community-hero__video-card\">\n                        \n\n<div class=\"community-hero__video\">\n                            <img decoding=\"async\" loading=\"lazy\" src=\"https:\/\/www.ultraconecta.com\/ar\/wp-content\/uploads\/Background-6.png\" alt=\"Ashley, paciente con XLH\">\n                            <button class=\"community-hero__play\" data-video-trigger data-video-src=\"videos\/ashley.mp4\" aria-label=\"Reproducir el video de Ashley\">\n                                <svg viewBox=\"0 0 54 54\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\" aria-hidden=\"true\">\n                                    <circle cx=\"27\" cy=\"27\" r=\"26\" fill=\"none\" stroke=\"#FFFFFF\" stroke-width=\"2\" opacity=\"0.85\"\/>\n                                    <polygon points=\"22,17 39,27 22,37\" fill=\"#FFFFFF\"\/>\n                                <\/svg>\n                            <\/button>\n                        <\/div>\n\n\n\n                        \n\n<div class=\"community-hero__name-bar\">\n                            <span class=\"community-hero__name-accent\" aria-hidden=\"true\">\n                                <span class=\"community-hero__name-cyan\"><\/span>\n                                <span class=\"community-hero__name-yellow\"><\/span>\n                            <\/span>\n                            \n\n<div class=\"community-hero__name-text\">\n                                \n\n<h2 class=\"community-hero__name\">La historia de Ashley<\/h2>\n\n\n                                \n\n<p class=\"community-hero__name-sub\">Ver el video<\/p>\n\n\n                            <\/div>\n\n\n                        <\/div>\n\n\n                    <\/article>\n\n --><\/p><\/div>\n<\/p><\/div>\n<\/section>\n<p>        <!-- ============================================================\n             PATIENT ORGANIZATIONS\n             ============================================================ --><\/p>\n<section class=\"organizations\">\n<div class=\"container\">\n<div class=\"content-wrap\">\n<p>                <!-- Breadcrumb --><\/p>\n<nav class=\"breadcrumb\" aria-label=\"Migas de pan\">\n                    <a href=\"https:\/\/www.ultraconecta.com\/ar\/\" class=\"breadcrumb__link\">Inicio<\/a><br \/>\n                    <span class=\"breadcrumb__sep\" aria-hidden=\"true\">\/<\/span><br \/>\n                   <!-- <a href=\"#\" class=\"breadcrumb__link\">Vivir con XLH<\/a> --><br \/>\n                    <span class=\"vivi-color\">Vivir con XLH<\/span><br \/>\n                    <span class=\"breadcrumb__sep\" aria-hidden=\"true\">\/<\/span><br \/>\n                    <span class=\"breadcrumb__current\">Comunidad XLH<\/span><br \/>\n                <\/nav>\n<h3 class=\"organizations__heading\">Organizaciones de pacientes<\/h3>\n<div class=\"organizations__list\">\n<p>                    <!-- Organization 1: La Red XLH (with logo + social) --><\/p>\n<article class=\"organization organization--with-logo\">\n<div class=\"organization__logo\">\n                            <img decoding=\"async\" loading=\"lazy\" src=\"https:\/\/www.ultraconecta.com\/ar\/wp-content\/uploads\/X-linked-Hypophosphatemia-Network-logo-1.png\" alt=\"Asociaci\u00f3n Argentina XLH\">\n                        <\/div>\n<div class=\"organization__body\">\n<h3 class=\"organization__name\">\n                                <a href=\"#\">XLH ARGENTINA<\/a><br \/>\n                            <\/h3>\n<p class=\"organization__text\">\n                                XLH Argentina es una asociaci\u00f3n creada en el a\u00f1o 2019 con el fin de unir a personas diagnosticadas con XLH, sus familiares, amigos, m\u00e9dicos y la sociedad en general, con la misi\u00f3n de dar a conocer esta enfermedad poco frecuente, promover el diagn\u00f3stico temprano y una mejor calidad de vida.\n                            <\/p>\n<ul class=\"organization__social\">\n<li>\n                                    <a href=\"https:\/\/www.instagram.com\/xlh_argentina\" class=\"organization__social-link\" aria-label=\"Twitter de La Red XLH\" target=\"_blank\"><br \/>\n                                       <!-- <svg viewBox=\"0 0 32 32\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\" aria-hidden=\"true\">\n                                            <circle cx=\"16\" cy=\"16\" r=\"16\" fill=\"#6D72A2\"\/>\n                                            <path d=\"M23 12.3c-0.5 0.2-1 0.4-1.6 0.4 0.6-0.3 1-0.9 1.2-1.6-0.5 0.3-1.1 0.5-1.7 0.7-0.5-0.5-1.2-0.9-2-0.9-1.5 0-2.7 1.2-2.7 2.7 0 0.2 0 0.4 0.1 0.6-2.3-0.1-4.3-1.2-5.6-2.9-0.2 0.4-0.4 0.9-0.4 1.4 0 0.9 0.5 1.8 1.2 2.3-0.4 0-0.9-0.1-1.2-0.3v0c0 1.3 0.9 2.4 2.2 2.7-0.2 0.1-0.5 0.1-0.7 0.1-0.2 0-0.3 0-0.5-0.1 0.3 1.1 1.3 1.9 2.5 1.9-0.9 0.7-2.1 1.1-3.3 1.1-0.2 0-0.4 0-0.6 0 1.2 0.8 2.6 1.2 4.1 1.2 4.9 0 7.6-4.1 7.6-7.6 0-0.1 0-0.2 0-0.3 0.5-0.4 1-0.8 1.4-1.4z\" fill=\"#FFFFFF\"\/>\n                                        <\/svg> --><br \/>\n<img decoding=\"async\" loading=\"lazy\" src=\"https:\/\/www.ultraconecta.com\/ar\/wp-content\/uploads\/Container-3.png\" alt=\"social-insta\"><br \/>\n                                    <\/a>\n                                <\/li>\n<li>\n                                    <a href=\"https:\/\/www.facebook.com\/xlhargentina\" class=\"organization__social-link\" aria-label=\"Facebook de La Red XLH\" target=\"_blank\"><br \/>\n                                        <svg viewBox=\"0 0 32 32\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\" aria-hidden=\"true\">\n                                            <circle cx=\"16\" cy=\"16\" r=\"16\" fill=\"#6D72A2\"\/>\n                                            <path d=\"M19 11h-2c-0.5 0-1 0.5-1 1v2h3l-0.5 3H16v7h-3v-7h-2v-3h2v-2.5c0-1.5 1-2.5 2.5-2.5H19v2z\" fill=\"#FFFFFF\"\/>\n                                        <\/svg><br \/>\n                                    <\/a>\n                                <\/li>\n<p>                          <a  href=\"https:\/\/xlhargentina.org.ar\" class=\"social-link\" target=\"_blank\"><br \/>\n                                  www.xlhargentina.org.ar<br \/>\n                            <\/a>\n                            <\/ul>\n<\/p><\/div>\n<\/article>\n<p><!-- organization new --><\/p>\n<article class=\"organization organization--with-logo\">\n<div class=\"organization__logo\">\n                            <img decoding=\"async\" loading=\"lazy\" src=\"https:\/\/www.ultraconecta.com\/ar\/wp-content\/uploads\/X-linked-Hypophosphatemia-Network-logo-1-1.png\" alt=\"Asociaci\u00f3n Argentina XLH\">\n                        <\/div>\n<div class=\"organization__body\">\n<h3 class=\"organization__name\">\n                                <a href=\"javascript:void(0);\">Fundaci\u00f3n ENHU\u00c9<\/a><br \/>\n                            <\/h3>\n<p class=\"organization__text\">\n                                Es una ONG creada en el 2010 que acompa\u00f1a,\u00a0difunde,\u00a0capacita\u00a0e\u00a0investiga sobre EPOF, con la misi\u00f3n de brindar un espacio de contenci\u00f3n, difusi\u00f3n, capacitaci\u00f3n e investigaci\u00f3n social para mejorar la calidad de vida de personas que conviven con una enfermedad poco frecuente.\n                            <\/p>\n<ul class=\"organization__social\">\n<li>\n                                    <a href=\" https:\/\/www.instagram.com\/fundacionenhue\/\" class=\"organization__social-link\" aria-label=\"Twitter de La Red XLH\" target=\"_blank\"><br \/>\n                                       <!-- <svg viewBox=\"0 0 32 32\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\" aria-hidden=\"true\">\n                                            <circle cx=\"16\" cy=\"16\" r=\"16\" fill=\"#6D72A2\"\/>\n                                            <path d=\"M23 12.3c-0.5 0.2-1 0.4-1.6 0.4 0.6-0.3 1-0.9 1.2-1.6-0.5 0.3-1.1 0.5-1.7 0.7-0.5-0.5-1.2-0.9-2-0.9-1.5 0-2.7 1.2-2.7 2.7 0 0.2 0 0.4 0.1 0.6-2.3-0.1-4.3-1.2-5.6-2.9-0.2 0.4-0.4 0.9-0.4 1.4 0 0.9 0.5 1.8 1.2 2.3-0.4 0-0.9-0.1-1.2-0.3v0c0 1.3 0.9 2.4 2.2 2.7-0.2 0.1-0.5 0.1-0.7 0.1-0.2 0-0.3 0-0.5-0.1 0.3 1.1 1.3 1.9 2.5 1.9-0.9 0.7-2.1 1.1-3.3 1.1-0.2 0-0.4 0-0.6 0 1.2 0.8 2.6 1.2 4.1 1.2 4.9 0 7.6-4.1 7.6-7.6 0-0.1 0-0.2 0-0.3 0.5-0.4 1-0.8 1.4-1.4z\" fill=\"#FFFFFF\"\/>\n                                        <\/svg> --><br \/>\n<img decoding=\"async\" loading=\"lazy\" src=\"https:\/\/www.ultraconecta.com\/ar\/wp-content\/uploads\/Container-3.png\" alt=\"social-insta\"><br \/>\n                                    <\/a>\n                                <\/li>\n<li>\n                                    <a href=\"https:\/\/www.facebook.com\/fundacionenhue\/\" class=\"organization__social-link\" aria-label=\"Facebook de La Red XLH\" target=\"_blank\"><br \/>\n                                        <svg viewBox=\"0 0 32 32\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\" aria-hidden=\"true\">\n                                            <circle cx=\"16\" cy=\"16\" r=\"16\" fill=\"#6D72A2\"\/>\n                                            <path d=\"M19 11h-2c-0.5 0-1 0.5-1 1v2h3l-0.5 3H16v7h-3v-7h-2v-3h2v-2.5c0-1.5 1-2.5 2.5-2.5H19v2z\" fill=\"#FFFFFF\"\/>\n                                        <\/svg><br \/>\n                                    <\/a>\n                                <\/li>\n<p>                          <a href=\"https:\/\/fundacionenhue.org\" class=\"social-link\" target=\"_blank\"><br \/>\n                                  www.fundacionenhue.org<br \/>\n                            <\/a>\n                            <\/ul>\n<\/p><\/div>\n<\/article>\n<p>                    <!-- Organization 2: NORD --><br \/>\n            <!--       \n\n<article class=\"organization\">\n                        \n\n<div class=\"organization__body\">\n                            \n\n<h3 class=\"organization__name\">\n                                <a href=\"#\">Organizaci\u00f3n Nacional de Enfermedades Raras (NORD)<\/a>\n                            <\/h3>\n\n\n                            \n\n<p class=\"organization__text\">\n                                NORD es una organizaci\u00f3n de defensa del paciente dedicada a las\n                                personas con enfermedades raras y a las organizaciones que las atienden.\n                            <\/p>\n\n\n                        <\/div>\n\n\n                    <\/article>\n\n --><\/p>\n<p>                    <!-- Organization 3: Global Genes --><br \/>\n             <!--       \n\n<article class=\"organization\">\n                        \n\n<div class=\"organization__body\">\n                            \n\n<h3 class=\"organization__name\">\n                                <a href=\"#\">Global Genes<\/a>\n                            <\/h3>\n\n\n                            \n\n<p class=\"organization__text\">\n                                Global Genes es una organizaci\u00f3n de defensa del paciente de\n                                enfermedades raras que trabaja para concienciar, educar a la\n                                comunidad mundial y proporcionar conexi\u00f3n y recursos.\n                            <\/p>\n\n\n                        <\/div>\n\n\n                    <\/article>\n\n --><\/p><\/div>\n<\/p><\/div>\n<\/p><\/div>\n<\/section>\n<hr class=\"social-resources__divider\">\n<section class=\"references references-main\">\n<div class=\"container\">\n<div class=\"content-wrap-one\">\n<h2 class=\"references__title\">Referencia:<\/h2>\n<ol class=\"references__list\">\n<li class=\"references__item\">\n          Carpenter TO, et al.\u00a0J Bone Miner Res. 2011 Jul;26(7):1381\u20131388.\n        <\/li>\n<li class=\"references__item\">\n         Haffner D, et al. Nat Rev Nephrol. 2019 Jul;15(7):435-455.\n        <\/li>\n<\/ol><\/div>\n<\/p><\/div>\n<\/section>\n<p>        <!-- ============================================================\n             SUPPORT BAND \u2014 cyan promotional bar\n             ============================================================ --><br \/>\n       <!-- \n\n<section class=\"support-band\">\n            \n\n<div class=\"container\">\n                \n\n<h2 class=\"support-band__heading\">\n                    CONSEGU\u00cd EL APOYO EDUCATIVO QUE NECESITAS A TRAV\u00c9S DE LOS PR\u00d3XIMOS EVENTOS\n                <\/h2>\n\n\n            <\/div>\n\n\n        <\/section>\n\n --><\/p>\n<p>    <\/main><\/p>\n<div class=\"video-modal\" id=\"videoModal\" aria-hidden=\"true\" role=\"dialog\" aria-modal=\"true\" aria-label=\"Reproductor de video\">\n<div class=\"video-modal__backdrop\" data-modal-close><\/div>\n<div class=\"video-modal__dialog\">\n            <button class=\"video-modal__close\" type=\"button\" data-modal-close aria-label=\"Cerrar video\"><br \/>\n                <svg viewBox=\"0 0 32 32\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\" aria-hidden=\"true\">\n                    <line x1=\"6\" y1=\"6\" x2=\"26\" y2=\"26\" stroke=\"currentColor\" stroke-width=\"2.5\" stroke-linecap=\"round\"\/>\n                    <line x1=\"26\" y1=\"6\" x2=\"6\" y2=\"26\" stroke=\"currentColor\" stroke-width=\"2.5\" stroke-linecap=\"round\"\/>\n                <\/svg><br \/>\n            <\/button><\/p>\n<div class=\"video-modal__player\">\n                <video id=\"videoModalPlayer\" controls playsinline preload=\"metadata\" poster=\"images\/ashley.png\"><source src=\"videos\/ashley.mp4\" type=\"video\/mp4\">Tu navegador no soporta la reproducci\u00f3n de video.<\/video>\n            <\/div>\n<\/p><\/div>\n<\/p><\/div>\n","protected":false},"excerpt":{"rendered":"<p>COMUNIDAD XLH XLH es una enfermedad poco frecuente, pero no est\u00e1s solo. Existen organizaciones que pueden brindar informaci\u00f3n, recursos educativos y un espacio de comunidad a personas que conviven con XLH y sus familias. Conoc\u00e9 algunas a continuaci\u00f3n Inicio \/ Vivir con XLH \/ Comunidad XLH Organizaciones de pacientes XLH ARGENTINA XLH Argentina es una [&hellip;]<\/p>\n","protected":false},"author":3,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"footnotes":""},"class_list":["post-139","page","type-page","status-publish","hentry"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.5 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Comunidad XLH en Argentina<\/title>\n<meta name=\"description\" content=\"No est\u00e1s solo\/a. 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