{"id":3650,"date":"2018-04-13T05:23:00","date_gmt":"2018-04-13T05:23:00","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2018\/04\/13\/participamos-en-vii-conferencia-internacional-de-displasia-ectodermica\/"},"modified":"2018-04-13T05:23:00","modified_gmt":"2018-04-13T05:23:00","slug":"participamos-en-vii-conferencia-internacional-de-displasia-ectodermica","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2018\/04\/13\/participamos-en-vii-conferencia-internacional-de-displasia-ectodermica\/","title":{"rendered":"Participamos en VII Conferencia Internacional de Displasia Ectod\u00e9rmica"},"content":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n<p>La Asociaci\u00f3n de Afectados por Displasia Ectod\u00e9rmica (AADE) junto con el Grupo de Investigaci\u00f3n de Gen\u00e9tica Cl\u00ednica y Enfermedades Raras del Instituto Murciano de Investigaci\u00f3n Biom\u00e9dica (IMIB-Arrixaca) y CIBERER, y la Consejer\u00eda de Salud organizan la VII Conferencia Internacional de Displasia Ectod\u00e9rmica en Murcia, un acuerdo adoptado en la \u00faltima Conferencia celebrada en Oslo en el a\u00f1o 2015. &nbsp;FEDER estar\u00e1 presente en este encuentro gracias a la participaci\u00f3n e intervenci\u00f3n de nuestro presidente, Juan Carri\u00f3n.&nbsp;<\/p>\n<p>La conferencia se realizar\u00e1 el 12 y 13 de abril de 2018 en Murcia y el 14 de abril se celebrar\u00e1 la Reuni\u00f3n Internacional de los l\u00edderes de las distintas Asociaciones de Pacientes a nivel mundial (EDIN) y a continuaci\u00f3n el encuentro de familias.&nbsp;<span style=\"font-size: 11.97px;font-style: normal;font-weight: normal;line-height: 15.561px\">Desde el a\u00f1o 2015, se han producido numerosos avances cient\u00edficos merecedores de ser revisados en estas futuras jornadas y compartirlos con los cl\u00ednicos, investigadores, afectados y familiares. La Conferencia constituir\u00e1 adem\u00e1s el I Curso Internacional de Displasia Ectod\u00e9rmica.<\/span><\/p>\n<p>El congreso tendr\u00e1 un enfoque interdisciplinar e internacional, que unido a la reuni\u00f3n de asociaciones y familias y la colaboraci\u00f3n de numerosas instituciones y empresas regionales y nacionales, subraya, por primera vez, la importancia de la colaboraci\u00f3n de todos los agentes en el progreso y bienestar sanitario y social.<\/p>\n<p>La Conferencia es de gran relevancia cient\u00edfico-sanitaria al contar con la asistencia de numerosos expertos mundiales en DE, incluyendo los responsables de la Red Europea de Enfermedades Raras de la Piel (ERN-Skin) y del Grupo de trabajo europeo, y la presentaci\u00f3n de los resultados de los m\u00e1s recientes trabajos de investigaci\u00f3n en esta \u00e1rea, incluyendo la actualizaci\u00f3n del ensayo cl\u00ednico de una nueva terapia.&nbsp;<\/p>\n<p><a href=\"http:\/\/www.7thconferenceed2018.com\/12373\/detail\/7th-international-conference-on-ectodermal-dysplasia.html\" target=\"_blank\">Accede aqu\u00ed para ver la programaci\u00f3n de las jornadas y, si lo deseas, rellenar tu inscripci\u00f3n<\/a>.<\/p>\n<h3>Sobre las displasias ectod\u00e9rmicas<\/h3>\n<p>Las displasias ectod\u00e9rmicas (DE) son un grupo de m\u00e1s de 150 enfermedades gen\u00e9ticas en las que se afecta el desarrollo del ectodermo, la capa de tejido m\u00e1s externa del embri\u00f3n. El ectodermo contribuye a la formaci\u00f3n de distintas partes del cuerpo, incluyendo la piel, las gl\u00e1ndulas sudor\u00edparas, el pelo, los dientes y las u\u00f1as.<\/p>\n<p>Cuando una persona tiene al menos dos tipos de anomal\u00edas ectod\u00e9rmicas, por ejemplo pelo ralo y alteraciones dentarias, se dice que tiene un s\u00edndrome de DE. Cada uno de los m\u00e1s de 150 s\u00edndromes diferentes de DE representan una combinaci\u00f3n diferente de anomal\u00edas.<\/p>\n<p style=\"text-align: right\">\u00daltima actualizaci\u00f3n: 13 de abril de 2018.<\/p>\n<p>Fuente: FEDER <a href=\"https:\/\/enfermedades-raras.org\/index.php\/actualidad\/noticias-eventos\/2-feder\/9715-vii-conferencia-internacional-de-displasia-ectod%C3%A9rmica\" target=\"_blank\">Participamos en VII Conferencia Internacional de Displasia Ectod\u00e9rmica<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: La Asociaci\u00f3n de Afectados por Displasia Ectod\u00e9rmica (AADE) junto con el Grupo de Investigaci\u00f3n de Gen\u00e9tica Cl\u00ednica y Enfermedades Raras del Instituto Murciano de Investigaci\u00f3n Biom\u00e9dica (IMIB-Arrixaca) y CIBERER, y la Consejer\u00eda de Salud organizan la VII Conferencia Internacional de Displasia Ectod\u00e9rmica en [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[8],"tags":[36],"class_list":["post-3650","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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