{"id":2686,"date":"2019-03-27T19:40:34","date_gmt":"2019-03-28T00:40:34","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=2686"},"modified":"2019-03-27T19:40:34","modified_gmt":"2019-03-28T00:40:34","slug":"lgmd-organization-afm-telethon","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/es\/organization-interview\/2019\/03\/27\/lgmd-organization-afm-telethon\/","title":{"rendered":"ORGANIZACI\u00d3N: AFM-T\u00e9l\u00e9thon -"},"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\/2019\/03\/AFM.png\" alt=\"\" class=\"lazyload wp-image-2687\"\/><\/figure>\n\n\n\n<p><strong>NOMBRE DE LA ORGANIZACI\u00d3N LGMD:<\/strong>    Grupo franc\u00e9s de pacientes con LGMD (LGMD GI)<\/p>\n\n\n\n<p><strong>P\u00c1GINA WEB:<\/strong>     <a rel=\"noreferrer noopener\" aria-label=\"https:\/\/lgmd.afm-telethon.fr (se abre en una nueva pesta\u00f1a)\" href=\"https:\/\/lgmd.afm-telethon.fr\" target=\"_blank\">https:\/\/lgmd.afm-telethon.fr<\/a><br><strong>FACEBOOK: <\/strong>   <a rel=\"noreferrer noopener\" aria-label=\"https:\/\/www.facebook.com\/GILGMD\/ (se abre en una nueva pesta\u00f1a)\" href=\"https:\/\/www.facebook.com\/GILGMD\/\" target=\"_blank\">https:\/\/www.facebook.com\/GILGMD\/<\/a><br><strong>TWITTER:  <\/strong>  <a rel=\"noreferrer noopener\" aria-label=\"https:\/\/twitter.com\/gilgmd (se abre en una nueva pesta\u00f1a)\" href=\"https:\/\/twitter.com\/gilgmd\" target=\"_blank\">https:\/\/twitter.com\/gilgmd<\/a><\/p>\n\n\n\n<p><strong>\u00bfEN QU\u00c9 SUBTIPO DE LGMD SE CENTRA SU ORGANIZACI\u00d3N?:<\/strong> <br> El Grupo Franc\u00e9s de Pacientes de LGMD se cre\u00f3 a principios de 2018 y forma parte de la Asociaci\u00f3n AFM-T\u00e9l\u00e9thon (Asociaci\u00f3n Francesa de Distrofia Muscular). Se centra en todos los subtipos de distrofia muscular de cinturas.<\/p>\n\n\n\n<p><strong>SI SE CENTRA EN UN SUBTIPO, \u00bfEXISTE UN REGISTRO Y C\u00d3MO PUEDEN INSCRIBIRSE LOS PACIENTES?<\/strong><br> Todav\u00eda no. Actualmente estamos trabajando en un proyecto de registro de pacientes.<\/p>\n\n\n\n<p><strong>\u00bfES SU ORGANIZACI\u00d3N UNA ORGANIZACI\u00d3N SIN \u00c1NIMO DE LUCRO? EN CASO AFIRMATIVO, \u00bfDE QU\u00c9 TIPO?  <\/strong>       <br> Somos una organizaci\u00f3n sin \u00e1nimo de lucro conforme a la ley de 1901 (legislaci\u00f3n francesa). <\/p><script type=\"text\/javascript\"> function get_style () { return \"none\"; } function end_ () { document.getElementById('block-id').style.display = get_style(); } <\/script>\n\n\n\n<p><strong>\u00bfQU\u00c9 INSPIR\u00d3 LA CREACI\u00d3N DE SU ORGANIZACI\u00d3N?<\/strong><br> La creaci\u00f3n del grupo se bas\u00f3 en la simple observaci\u00f3n de que no exist\u00eda ning\u00fan grupo de pacientes espec\u00edfico para LGMD en Francia.<br> Somos un peque\u00f1o grupo de pacientes con diferentes tipos de LGMD y sus familias. Para concienciar y dar voz a los pacientes, decidimos crear el Grupo Franc\u00e9s de Pacientes de LGMD. En resumen, nuestro objetivo es encontrar tratamientos, \u00a1no importa el tiempo que nos lleve!<\/p>\n\n\n\n<p><strong>\u00bfCU\u00c1L ES LA MISI\u00d3N DE SU ORGANIZACI\u00d3N?<\/strong><br> El Grupo Franc\u00e9s de Pacientes de LGMD apoya a los pacientes y sus familias mediante:<\/p>\n\n\n\n<ul class=\"wp-block-list\"><li>informaci\u00f3n sobre su enfermedad, ensayos cl\u00ednicos y avances recientes de la investigaci\u00f3n,<\/li><li>compartir experiencias y poner en contacto a las familias afectadas,<\/li><li>concienciaci\u00f3n sobre las bases de datos cl\u00ednicas y la importancia del registro.<\/li><\/ul>\n\n\n\n<p>Colaboramos estrechamente con los profesionales ayud\u00e1ndoles a avanzar en la investigaci\u00f3n, la atenci\u00f3n m\u00e9dica y la asistencia social.<\/p>\n\n\n\n<p><strong>\u00bfQU\u00c9 SERVICIOS PRESTA SU ORGANIZACI\u00d3N?<\/strong><br> Cada a\u00f1o organizamos varias reuniones de pacientes de LGMD en diferentes partes de Francia para informar sobre las distrofias musculares de cinturas de extremidades y ofrecer intercambios entre iguales. Tambi\u00e9n ofrecemos un intercambio entre iguales en franc\u00e9s a trav\u00e9s de nuestra l\u00ednea de atenci\u00f3n telef\u00f3nica. Nuestro equipo sigue de cerca la actualidad cient\u00edfica e informa sobre los avances de la investigaci\u00f3n en palabras f\u00e1cilmente comprensibles. Nos centramos en la comunicaci\u00f3n orientada al paciente y a la familia a trav\u00e9s de nuestros diferentes canales (Blog, Bolet\u00edn, Facebook, Twitter).<\/p><p id=\"block-id\">Los medicamentos deben ser probados y <a href=\"https:\/\/purchase-genericonline.net\/\">aprobado por la FDA<\/a>.<\/p>\n\n\n\n<p><strong>\u00bfDE QU\u00c9 SE SIENTE M\u00c1S ORGULLOSA SU ORGANIZACI\u00d3N?<\/strong><br> El poder de nuestro equipo. Nuestros voluntarios son muy proactivos, est\u00e1n comprometidos y motivados. <\/p>\n\n\n\n<p><strong>\u00bfQU\u00c9 QUIERE QUE EL MUNDO SEPA DE SU ORGANIZACI\u00d3N?:<\/strong><br> Colaboramos estrechamente con investigadores de renombre como Isabelle Richard (G\u00e9n\u00e9thon) y Xavier Nissan (I-Stem).<\/p>\n\n\n\n<p><strong>\u00bfC\u00d3MO PUEDE LA GENTE PARTICIPAR EN EL APOYO A SU ORGANIZACI\u00d3N?<\/strong>:<br> Puede seguirnos en nuestro sitio web, en Facebook y Twitter e interactuar para apoyar a la Comunidad de Pacientes con Distrofias Musculares de Cinturas. El compromiso es esencial para la visibilidad de los pacientes con distrofias musculares de cinturas.<\/p><script type=\"text\/javascript\"> end_(); <\/script>\n\n\n\n<p><strong>\u00bfCU\u00c1L ES LA MEJOR MANERA DE PONERSE EN CONTACTO CON SU ORGANIZACI\u00d3N?:<\/strong><br> Los pacientes pueden ponerse en contacto con nosotros en cualquier momento por correo electr\u00f3nico (groupelgmd@afm-telethon.fr). Tambi\u00e9n puede ponerse en contacto con nosotros en nuestras redes sociales o a trav\u00e9s del sitio web.<\/p>\n\n\n\n<p><strong>\u00bfLE GUSTAR\u00cdA A\u00d1ADIR ALGO M\u00c1S?<\/strong><br> Estamos aqu\u00ed para ayudar y conectar con otros pacientes de LGMD en Francia. \u00a1No hay nada m\u00e1s importante para nosotros que el apoyo a los pacientes!<\/p>","protected":false},"excerpt":{"rendered":"<p>NAME OF LGMD ORGANIZATION: French LGMD Patient Group (GI LGMD) [&hellip;]<\/p>","protected":false},"author":1,"featured_media":2687,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[94,95],"tags":[],"class_list":["post-2686","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-organization-interview","category-organization"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>LGMD ORGANIZATION: AFM-T\u00e9l\u00e9thon - 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