{"id":4081,"date":"2018-11-06T09:03:24","date_gmt":"2018-11-06T09:03:24","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2018\/11\/06\/asistimos-al-seminario-enfermedades-lisosomicas-un-foco-en-la-enfermedad-de-fabry\/"},"modified":"2018-11-06T09:03:24","modified_gmt":"2018-11-06T09:03:24","slug":"asistimos-al-seminario-enfermedades-lisosomicas-un-foco-en-la-enfermedad-de-fabry","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2018\/11\/06\/asistimos-al-seminario-enfermedades-lisosomicas-un-foco-en-la-enfermedad-de-fabry\/","title":{"rendered":"Asistimos al Seminario \u201cEnfermedades Lisos\u00f3micas: Un foco en la enfermedad de Fabry\u201d"},"content":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n<p>&nbsp;<\/p>\n<p>Jordi Cruz, vocal de nuestra Junta Directiva participar\u00e1 en el Seminario \u201cEnfermedades Lisos\u00f3micas: Un foco en la enfermedad de Fabry\u201d organizado por el Hospital Universitario Vall d\u2019 Hebron que se realizar\u00e1 el pr\u00f3ximo 19 de noviembre en el Sal\u00f3n Principal de conferencias en el Pabell\u00f3n Docente a partir de las 9:00 h.<\/p>\n<p>Este seminario se nutre de profesionales sanitarios que analizar\u00e1n los principales aspectos de la enfermedad: nefrol\u00f3gicos, cardiol\u00f3gicos, neurol\u00f3gicos.<span style=\"font-size: 11.97px;line-height: 1.3\">Adem\u00e1s, se abordar\u00e1 nuevas estrategias terap\u00e9uticas para los trastornos lisosomales, as\u00ed como los enfoques de terapia g\u00e9nica para Sanfilippo A y otros trastornos lisos\u00f3micos. De igual forma, esta jornada permitir\u00e1 desarrollar el manejo multidisciplinar de la enfermedad de Fabry as\u00ed como su tratamiento.<\/span><\/p>\n<p>Este a\u00f1o, se ha incorporado tambi\u00e9n un foro abierto de pacientes y cuidadores para analizar la situaci\u00f3n actual de los diferentes tratamientos para las enfermedades lisosomales. Las personas que deseen m\u00e1s informaci\u00f3n sobre este seminario podr\u00e1n solicitarlo a trav\u00e9s de los correos electr\u00f3nicos. minoritaries_VH@vhebron.net o al smart4fabry@smart4fabry.eu. De igual forma, <span style=\"text-decoration: underline\"><a href=\"http:\/\/www.vhir.org\/activitats\/relacioactivitats_formulari_new.asp?Idioma=es&amp;ANYACTIVITAT=2018&amp;NUMEROACTIVITAT=157\">las inscripciones se podr\u00e1n realizar a trav\u00e9s del siguiente enlace.<\/a><\/span><\/p>\n<p><span style=\"text-decoration: underline\"><a href=\"http:\/\/es.vhir.org\/DDGRecerca\/DOCENCIAACTIVITATS\/2018\/2018_0157\/2018_0157_021.pdf\">Si desean conocer a profundidad el programa de esta jornada lo podr\u00e1n hacer a trav\u00e9s de este enlace.<\/a><\/span><\/p>\n<h3>Sobre la Enfermedad de Fabry<\/h3>\n<p>La enfermedad de Fabry (EF) es una patolog\u00eda hereditaria, progresiva y multisist\u00e9mica del metabolismo de los glicoesfingol\u00edpidos. Afecta de forma t\u00edpica a varones hemicigotos con una deficiencia del enzima alfa galactosidasa A y se caracteriza por manifestaciones neurol\u00f3gicas (dolor), cut\u00e1neas (angioquerotema), renales (proteinuria y fallo renal), cardiovasculares (cardiomiopat\u00eda y arritmia), cocleovestibulares y cerebrovasculares (ictus).<\/p>\n<p>La EF es pan-\u00e9tnica y la prevalencia descrita var\u00eda entre 1-5\/100.000, pero su prevalencia real puede estar subestimada. Los s\u00edntomas cl\u00ednicos (dolor agudo y cr\u00f3nico, caracterizado por quemaz\u00f3n, hormigueo y parestesias en las extremidades) se presentan generalmente en la infancia, normalmente entre los 4 y 10 a\u00f1os de edad.<\/p>\n<p style=\"text-align: right\">\u00daltima actualizaci\u00f3n: 6 de noviembre de 2018.<\/p>\n<p>&nbsp;<\/p>\n<p>Fuente: FEDER <a href=\"https:\/\/enfermedades-raras.org\/index.php\/actualidad\/noticias-eventos\/2-feder\/11387-asistimos-al-seminario-%E2%80%9Cenfermedades-lisos%C3%B3micas-un-foco-en-la-enfermedad-de-fabry%E2%80%9D\" target=\"_blank\">Asistimos al Seminario \u201cEnfermedades Lisos\u00f3micas: Un foco en la enfermedad de Fabry\u201d<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: &nbsp; Jordi Cruz, vocal de nuestra Junta Directiva participar\u00e1 en el Seminario \u201cEnfermedades Lisos\u00f3micas: Un foco en la enfermedad de Fabry\u201d organizado por el Hospital Universitario Vall d\u2019 Hebron que se realizar\u00e1 el pr\u00f3ximo 19 de noviembre en el Sal\u00f3n Principal de conferencias [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[8],"tags":[36],"class_list":["post-4081","post","type-post","status-publish","format-standard","hentry","category-noticias","tag-enfermedades-raras"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.4 - 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