{"id":7271,"date":"2024-11-08T14:40:41","date_gmt":"2024-11-08T17:40:41","guid":{"rendered":"https:\/\/adm.org.ar\/newsite\/?p=7271"},"modified":"2024-11-08T14:42:16","modified_gmt":"2024-11-08T17:42:16","slug":"4a-jornada-iberoamericana-sobre-distrofia-muscular-de-cinturas-lgmd-2024","status":"publish","type":"post","link":"https:\/\/adm.org.ar\/newsite\/4a-jornada-iberoamericana-sobre-distrofia-muscular-de-cinturas-lgmd-2024\/","title":{"rendered":"4\u00aa Jornada Iberoamericana sobre Distrofia Muscular de Cinturas (LGMD) 2024"},"content":{"rendered":"\n<p>En el marco del 30 de septiembre, D\u00eda Mundial de la Distrofia Muscular de Cinturas, el pasado 5 de octubre de 2024 se llev\u00f3 a cabo la <strong>4\u00aa Jornada Iberoamericana LGMD 2024<\/strong>, un evento virtual que reuni\u00f3 a una amplia comunidad de personas afectadas por enfermedades neuromusculares en general y distrofia muscular de cinturas (LGMD) en particular, as\u00ed como tambi\u00e9n, a un grupo de profesionales del \u00e1rea de salud de diferentes pa\u00edses. De la jornada participaron m\u00e1s de 80 personas de Chile, Espa\u00f1a, Estados Unidos y Argentina, entre otros y, fue transmitida en vivo con interpretaci\u00f3n simult\u00e1nea al ingl\u00e9s.&nbsp;<\/p>\n\n\n\n<figure class=\"wp-block-image size-large\"><img fetchpriority=\"high\" decoding=\"async\" width=\"1024\" height=\"1024\" src=\"https:\/\/adm.org.ar\/newsite\/wp-content\/uploads\/2024\/11\/jornada-1024x1024.jpeg\" alt=\"\" class=\"wp-image-7272\" srcset=\"https:\/\/adm.org.ar\/newsite\/wp-content\/uploads\/2024\/11\/jornada-1024x1024.jpeg 1024w, https:\/\/adm.org.ar\/newsite\/wp-content\/uploads\/2024\/11\/jornada-300x300.jpeg 300w, https:\/\/adm.org.ar\/newsite\/wp-content\/uploads\/2024\/11\/jornada-150x150.jpeg 150w, https:\/\/adm.org.ar\/newsite\/wp-content\/uploads\/2024\/11\/jornada-768x768.jpeg 768w, https:\/\/adm.org.ar\/newsite\/wp-content\/uploads\/2024\/11\/jornada.jpeg 1080w\" sizes=\"(max-width: 1024px) 100vw, 1024px\" \/><\/figure>\n\n\n\n<p>Vale destacar que el \u00e9xito del encuentro fue producto del trabajo en equipo, coordinado y articulado entre<strong> DIMUS Chile<\/strong>, <strong>Proyecto Alpha de Espa\u00f1a<\/strong> y <strong>ADM Argentina<\/strong>, de la mano del<strong> Grupo LGMD<\/strong>. Incorporando muy especialmente \u00e9ste a\u00f1o a la <strong>Fundaci\u00f3n AKARI de Estados Unidos<\/strong>.<\/p>\n\n\n\n<p>Con el objetivo de informar, visibilizar y concientizar sobre estas enfermedades poco frecuentes, se cont\u00f3 con la participaci\u00f3n de destacados expositores, entre ellos:<\/p>\n\n\n\n<p><strong>Dr. Jorge Bevilacqua Rivas,<\/strong> especialista en neurolog\u00eda y enfermedades neuromusculares, quien abord\u00f3 la importancia de los controles de salud en la distrofia muscular de cintura y las investigaciones en curso.<\/p>\n\n\n\n<p><strong>Dra. Rosa Pardo,<\/strong> Jefa de la Secci\u00f3n de Gen\u00e9tica del Dpto. de Medicina del Hospital Cl\u00ednico de la Universidad de Chile. Qui\u00e9n colabor\u00f3 en la secci\u00f3n de preguntas y respuestas con el Dr. Bevilacqua Rivas.<\/p>\n\n\n\n<p><strong>Oscar Hern\u00e1ndez Lanas<\/strong>, Terapeuta ocupacional, que brind\u00f3 valiosa informaci\u00f3n sobre los elementos que ayudan a mejorar la calidad de vida de las personas afectadas.<\/p>\n\n\n\n<p><strong>Jos\u00e9 Ram\u00f3n Corder\u00ed<\/strong>, kinesi\u00f3logo, quien comparti\u00f3 consejos sobre fisioterapia y rehabilitaci\u00f3n.<\/p>\n\n\n\n<p><strong>Irene Zschaeck,<\/strong> psic\u00f3loga, que motiv\u00f3 a los participantes con su charla titulada &#8220;Seguir andando&#8221;, enfocada en la resiliencia y la superaci\u00f3n personal.<\/p>\n\n\n\n<p>Este evento cont\u00f3 con el apoyo de diversas organizaciones internacionales, como CEPACAL, CERPOHCHI, FADEPOF, Sant Joan de D\u00e9u Barcelona, y otras federaciones de Chile y Argentina. La colaboraci\u00f3n de estas organizaciones fue clave para el \u00e9xito del encuentro, donde se discutieron avances en tratamientos, terapias y cuidados para mejorar la calidad de vida de quienes viven con distrofia muscular de cinturas y otras enfermedades poco frecuentes.<\/p>\n\n\n\n<p>Si no tuviste la posibilidad de participar de la misma, <a href=\"https:\/\/www.youtube.com\/watch?v=jgfHumlPSus\" target=\"_blank\" rel=\"noreferrer noopener\">te compartimos el link <\/a>para que la veas por nuestro canal de YouTube.<\/p>\n\n\n\n<p>Agradecemos a todos los participantes, expositores y sponsors por acompa\u00f1arnos en esta importante jornada, que reafirma el compromiso de la comunidad con la mejora continua en el tratamiento y apoyo a personas con LGMD. \u00a1Nos vemos en la pr\u00f3xima edici\u00f3n!<\/p>\n","protected":false},"excerpt":{"rendered":"<p>En el marco del 30 de septiembre, D\u00eda Mundial de la Distrofia Muscular de Cinturas, el pasado 5 de octubre de 2024 se llev\u00f3 a cabo la 4\u00aa Jornada Iberoamericana LGMD 2024, un evento virtual que reuni\u00f3 a una amplia comunidad de personas afectadas por enfermedades neuromusculares en general y distrofia muscular de cinturas (LGMD) [&hellip;]<\/p>\n","protected":false},"author":2,"featured_media":7272,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_joinchat":[],"footnotes":""},"categories":[14],"tags":[],"class_list":["post-7271","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-noticias"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.1.1 - 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