{"id":2210,"date":"2018-08-26T18:11:20","date_gmt":"2018-08-26T23:11:20","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=2210"},"modified":"2018-08-26T18:11:20","modified_gmt":"2018-08-26T23:11:20","slug":"lgmd2l-foundation","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/es\/lgmd2l\/2018\/08\/26\/lgmd2l-foundation\/","title":{"rendered":"ORGANIZACI\u00d3N: Fundaci\u00f3n LGMD2L"},"content":{"rendered":"<figure class=\"wp-block-image\"><img decoding=\"async\" src=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%27960%27%20height%3D%27720%27%20viewBox%3D%270%200%20960%20720%27%3E%3Crect%20width%3D%27960%27%20height%3D%27720%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2018\/08\/LGMD2L-Foundation.png\" alt=\"\" class=\"lazyload wp-image-2211\"\/><\/figure>\n\n\n<p><strong>NOMBRE DE LA ORGANIZACI\u00d3N<\/strong>:   Fundaci\u00f3n LGMD2L<\/p>\n<p><strong>P\u00c1GINA WEB:<\/strong>\u00a0 \u00a0 \u00a0<a href=\"http:\/\/LGMD2L-Foundation.org\">LGMD2L-Foundation.org<\/a><\/p>\n<p><strong>Facebook:\u00a0 \u00a0 <\/strong><a href=\"http:\/\/Https:\/www.facebook.com\/LGMD2L-Foundation-208147369909916\">Https:\/\/www.facebook.com\/LGMD2L-Foundation<\/a><\/p>\n<p><strong>Twitter:\u00a0 \u00a0 \u00a0 \u00a0 <\/strong>@LGMD2L<\/p>\n<p><strong>EN QU\u00c9 SUBTIPO DE LGMD SE CENTRA SU ORGANIZACI\u00d3N:\u00a0 <\/strong><\/p>\n<p>Nos centramos en la distrofia muscular de cinturas tipo 2L (LGMD2L)<\/p>\n<p><strong>SI SE CENTRA EN UN SUBTIPO, \u00bfEXISTE UN REGISTRO Y C\u00d3MO PUEDEN INSCRIBIRSE LOS PACIENTES? <\/strong><\/p>\n<p>S\u00ed, el Registro de Pacientes para LGMD2L es accesible a trav\u00e9s de nuestra p\u00e1gina web en <a href=\"http:\/\/www.lgmd2l-foundation.org\/patient-registration\">www.lgmd2l-foundation.org\/patient-registration<\/a><\/p>\n<p><strong>\u00bfEs su organizaci\u00f3n una organizaci\u00f3n sin \u00e1nimo de lucro? En caso afirmativo, de qu\u00e9 tipo:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><\/p>\n<p>S\u00ed, organizaci\u00f3n ben\u00e9fica p\u00fablica exenta de impuestos 501 (c)(3) con sede en Estados Unidos.<\/p>\n<p><strong>QU\u00c9 INSPIR\u00d3 LA CREACI\u00d3N DE SU ORGANIZACI\u00d3N<\/strong>:<\/p>\n<p>Principalmente, la necesidad de desarrollar un registro de pacientes para los individuos diagnosticados con LGMD2L con el fin de estar preparados para los ensayos cl\u00ednicos, cuando est\u00e9n disponibles.<\/p>\n<p><strong>CU\u00c1L ES LA MISI\u00d3N DE SU ORGANIZACI\u00d3N:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><\/p>\n<p>El objetivo de la Fundaci\u00f3n LGMD2L es unir a las personas afectadas por esta enfermedad rara. Adem\u00e1s, proporcionar un foro abierto para conectar, discutir y, en \u00faltima instancia, construir una comunidad de miembros de LGMD2L. Aunque nuestra enfermedad es rara y poco conocida, hemos creado esta fundaci\u00f3n para construir una base de datos de pacientes de LGMD2L para futuras investigaciones cient\u00edficas y ensayos cl\u00ednicos. La \u00fanica manera de lograr un cambio es unir a aquellos que est\u00e1n impulsados por una cura.<\/p>\n<p><strong>QU\u00c9 SERVICIOS PRESTA SU ORGANIZACI\u00d3N:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><\/p>\n<p>Registro, informaci\u00f3n a trav\u00e9s de la web y las redes sociales. Apoyo cuando sea necesario y conexiones con otros recursos comunitarios.<\/p>\n<p><strong>DE QU\u00c9 SE SIENTE M\u00c1S ORGULLOSA SU ORGANIZACI\u00d3N\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><\/p>\n<p>Conseguir nuestro estatus de organizaci\u00f3n sin \u00e1nimo de lucro y poner en marcha la p\u00e1gina web con el registro.<\/p>\n<p><strong>\u00bfQu\u00e9 quiere que el mundo sepa sobre SU ORGANIZACI\u00d3N?<\/strong>:<\/p>\n<p>Estamos desarrollando grandes conexiones en esta \u00e1rea y esperamos construir un registro que nos ayude cuando los ensayos cl\u00ednicos est\u00e9n listos para ponerse en marcha.<\/p>\n<p><strong>C\u00d3MO PUEDE PARTICIPAR LA GENTE EN EL APOYO A SU ORGANIZACI\u00d3N:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><\/p>\n<p>Nuestro sitio web tendr\u00e1 informaci\u00f3n para ponerse en contacto con nosotros y, eventualmente, para hacer donaciones deducibles de impuestos que necesitaremos para seguir conectados con la informaci\u00f3n en actos y conferencias.<\/p>\n<p><strong>CU\u00c1L ES LA MEJOR MANERA DE PONERSE EN CONTACTO CON SU ORGANIZACI\u00d3N:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><\/p>\n<p>Nuestra p\u00e1gina web contiene nuestro correo electr\u00f3nico y n\u00famero de tel\u00e9fono. P\u00f3ngase en contacto con nosotros en cualquier momento. Tambi\u00e9n puede enviarnos un mensaje a trav\u00e9s de Facebook o Twitter.<\/p>\n<p><strong>\u00bfLE GUSTAR\u00cdA A\u00d1ADIR ALGO M\u00c1S?\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><\/p>\n<p>Esperamos tener \u00e9xito en la consecuci\u00f3n de curas y tratamientos para la LGMD2L.<\/p>\n<p>\u00a0<\/p>\n<p>* Para leer m\u00e1s \"LGMD Spotlight Interviews\" o presentarse voluntario para una pr\u00f3xima entrevista, visite nuestro sitio web en\u00a0 <a href=\"https:\/\/www.lgmd-info.org\/es\/spotlight-interviews\/\">https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a><\/p>","protected":false},"excerpt":{"rendered":"<p>NAME OF ORGANIZATION:\u00a0 \u00a0LGMD2L Foundation WEBSITE:\u00a0 \u00a0 \u00a0LGMD2L-Foundation.org Facebook:\u00a0 \u00a0 [&hellip;]<\/p>","protected":false},"author":1,"featured_media":2211,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[94,49,95],"tags":[],"class_list":["post-2210","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-organization-interview","category-lgmd2l","category-organization"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - 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