{"id":5397,"date":"2021-07-27T00:20:35","date_gmt":"2021-07-27T00:20:35","guid":{"rendered":"https:\/\/www.lgmd-info.org\/?p=5397"},"modified":"2024-02-09T14:24:03","modified_gmt":"2024-02-09T14:24:03","slug":"lgmd-organization-uildm","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/es\/organization-interview\/2021\/07\/27\/lgmd-organization-uildm\/","title":{"rendered":"ORGANIZACI\u00d3N LGMD: Grupo UILDM LGMD"},"content":{"rendered":"

\"Uildm\"<\/p>\n

ORGANIZACI\u00d3N<\/strong>: Grupo UILDM LGMD<\/p>\n

P\u00c1GINA WEB:<\/strong> https:\/\/www.uildm.org\/<\/a><\/p>\n

FACEBOOK: <\/strong>https:\/\/www.facebook.com\/uildm.naz<\/a><\/p>\n

TWITTER: <\/strong>https:\/\/twitter.com\/UILDMnazionale<\/a><\/p>\n

EN QU\u00c9 SUBTIPO DE LGMD SE CENTRA SU ORGANIZACI\u00d3N: <\/strong><\/p>\n

El Grupo UILDM LGMD no se centra en un subtipo espec\u00edfico de LGMD. Se refiere a todos los tipos de LGMD.<\/p>\n

QU\u00c9 INSPIR\u00d3 LA CREACI\u00d3N DE SU ORGANIZACI\u00d3N<\/strong>:<\/p>\n

Nos hemos inspirado en la necesidad de las personas que viven con una Distrofia Muscular de Cinturas de formar parte de un grupo representativo que pudiera darles voz, ya que les resulta dif\u00edcil encontrar respuestas a sus necesidades y muy a menudo son olvidadas por las Instituciones.<\/p>\n

CU\u00c1L ES LA MISI\u00d3N DE SU ORGANIZACI\u00d3N:<\/strong><\/p>\n

Las actividades del Grupo LGMD de la UILDM se centran en: - Fomentar el desarrollo de una comunidad LGMD; - Proporcionar informaci\u00f3n cient\u00edfica y m\u00e9dica sobre LGMD; - Apoyar el intercambio de experiencias y consejos entre personas que comparten la misma condici\u00f3n.<\/p>\n

QU\u00c9 SERVICIOS PRESTA SU ORGANIZACI\u00d3N:<\/strong><\/p>\n

Hemos creado dos grupos de WhatsApp: uno para ofrecer noticias y actualizaciones sobre el mundo de la LGMD, y el otro es un grupo abierto de autoayuda en el que los miembros pueden intercambiar ideas, experiencias y consejos. Organizamos reuniones peri\u00f3dicas en l\u00ednea para facilitar los intercambios entre iguales y compartir informaci\u00f3n sobre las actividades del grupo. Tambi\u00e9n organizamos seminarios web en l\u00ednea con especialistas del mundo cient\u00edfico y m\u00e9dico de acuerdo con nuestro Comit\u00e9 Cient\u00edfico.<\/p>\n

DE QU\u00c9 SE SIENTE M\u00c1S ORGULLOSA SU ORGANIZACI\u00d3N<\/strong><\/p>\n

El grupo est\u00e1 muy motivado y sigue aumentando en n\u00famero. Los miembros est\u00e1n dispuestos a ayudarse mutuamente y a menudo encuentran juntos soluciones a problemas comunes.<\/p>\n

\u00bfQU\u00c9 QUIERE QUE EL MUNDO SEPA DE SU ORGANIZACI\u00d3N?<\/strong>:<\/p>\n

Queremos que la gente sepa que el Grupo UILDM LGMD existe y est\u00e1 disponible para toda la comunidad LGMD. Cuanto m\u00e1s crezca nuestro grupo, m\u00e1s poder podremos dar a nuestras peticiones.<\/p>\n

C\u00d3MO PUEDE PARTICIPAR LA GENTE EN EL APOYO A SU ORGANIZACI\u00d3N:<\/strong><\/p>\n

La gente puede participar escribiendo a la direcci\u00f3n de correo gruppocingoli@uildm.it y pidiendo unirse a nuestro grupo de WhatsApp. Tambi\u00e9n pueden encontrar informaci\u00f3n actualizada sobre nuestras actividades en el sitio web de la UILDM y en la p\u00e1gina de Facebook.<\/p>\n

CU\u00c1L ES LA MEJOR MANERA DE PONERSE EN CONTACTO CON SU ORGANIZACI\u00d3N:<\/strong><\/p>\n

Puede ponerse en contacto con nosotros por correo electr\u00f3nico en la direcci\u00f3n gruppocingoli@uildm.it<\/a><\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":3,"featured_media":5421,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[94,95],"tags":[],"class_list":["post-5397","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-organization-interview","category-organization"],"acf":[],"yoast_head":"\nLGMD ORGANIZATION: UILDM LGMD Group - LGMD Awareness Foundation<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.lgmd-info.org\/es\/organization-interview\/2021\/07\/27\/lgmd-organization-uildm\/\" \/>\n<meta property=\"og:locale\" content=\"es_MX\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"LGMD ORGANIZATION: UILDM LGMD Group - 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