{"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\/fr\/organization-interview\/2021\/07\/27\/lgmd-organization-uildm\/","title":{"rendered":"LGMD ORGANISATION : Groupe LGMD de l'UILDM"},"content":{"rendered":"

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

ORGANISATION<\/strong>: Groupe UILDM LGMD<\/p>\n

SITE 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

QUEL EST LE SOUS-TYPE DE LGMD SUR LEQUEL VOTRE ORGANISATION SE CONCENTRE : <\/strong><\/p>\n

Le groupe LGMD de l'UILDM ne se concentre pas sur un sous-type sp\u00e9cifique de LGMD. Il se r\u00e9f\u00e8re \u00e0 tous les types de LGMD.<\/p>\n

CE QUI A INSPIR\u00c9 LA CR\u00c9ATION DE VOTRE ORGANISATION<\/strong>:<\/p>\n

Nous avons \u00e9t\u00e9 inspir\u00e9s par le besoin des personnes vivant avec une dystrophie musculaire des ceintures de faire partie d'un groupe repr\u00e9sentatif qui pourrait leur donner une voix, car il est difficile pour eux de trouver des r\u00e9ponses \u00e0 leurs besoins et, tr\u00e8s souvent, ils sont oubli\u00e9s par les institutions.<\/p>\n

QUELLE EST LA MISSION DE VOTRE ORGANISATION :<\/strong><\/p>\n

Les activit\u00e9s du groupe LGMD de l'UILDM se concentrent sur : - Encourager le d\u00e9veloppement d'une communaut\u00e9 LGMD ; - Fournir des informations scientifiques et m\u00e9dicales sur la LGMD ; - Soutenir l'\u00e9change d'exp\u00e9riences et de conseils entre les personnes qui partagent la m\u00eame maladie.<\/p>\n

QUELS SONT LES SERVICES OFFERTS PAR VOTRE ORGANISATION :<\/strong><\/p>\n

Nous avons cr\u00e9\u00e9 deux groupes WhatsApp : l'un pour fournir des nouvelles et des mises \u00e0 jour sur le monde du LGMD, l'autre est un groupe d'entraide ouvert o\u00f9 les membres peuvent \u00e9changer des id\u00e9es, des exp\u00e9riences et des conseils. Nous organisons r\u00e9guli\u00e8rement des r\u00e9unions en ligne pour permettre des \u00e9changes entre pairs et partager des informations sur les activit\u00e9s du groupe. Nous organisons \u00e9galement des webinaires en ligne avec des sp\u00e9cialistes du monde scientifique et m\u00e9dical, en accord avec notre comit\u00e9 scientifique.<\/p>\n

DE QUOI VOTRE ORGANISATION EST-ELLE LA PLUS FI\u00c8RE ?<\/strong><\/p>\n

Le groupe est tr\u00e8s motiv\u00e9 et continue d'augmenter en nombre. Les membres sont pr\u00eats \u00e0 s'entraider et trouvent souvent ensemble des solutions \u00e0 des probl\u00e8mes communs.<\/p>\n

QUE VOULEZ-VOUS QUE LE MONDE SACHE \u00c0 PROPOS DE VOTRE ORGANISATION ?<\/strong>:<\/p>\n

Nous voulons que les gens sachent que le groupe UILDM LGMD existe et est disponible pour toute la communaut\u00e9 LGMD. Plus notre groupe grandira, plus nous pourrons donner du poids \u00e0 nos demandes.<\/p>\n

COMMENT LES GENS PEUVENT-ILS S'IMPLIQUER DANS LE SOUTIEN DE VOTRE ORGANISATION :<\/strong><\/p>\n

Les gens peuvent s'impliquer en \u00e9crivant \u00e0 l'adresse gruppocingoli@uildm.it et en demandant \u00e0 rejoindre notre groupe WhatsApp. Ils peuvent \u00e9galement trouver des informations sur nos activit\u00e9s sur le site web de l'UILDM et sur notre page Facebook.<\/p>\n

QUEL EST LE MEILLEUR MOYEN DE CONTACTER VOTRE ORGANISATION :<\/strong><\/p>\n

Les personnes int\u00e9ress\u00e9es peuvent nous contacter par courrier \u00e9lectronique \u00e0 l'adresse suivante 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\/fr\/organization-interview\/2021\/07\/27\/lgmd-organization-uildm\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"LGMD ORGANIZATION: UILDM LGMD Group - 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