{"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\/fr\/lgmd2l\/2018\/08\/26\/lgmd2l-foundation\/","title":{"rendered":"ORGANISATION : Fondation 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>NOM DE L'ORGANISATION<\/strong>:   Fondation LGMD2L<\/p>\n<p><strong>SITE WEB :<\/strong>\u00a0 \u00a0 \u00a0<a href=\"http:\/\/LGMD2L-Foundation.org\">Fondation LGMD2L.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>QUEL EST LE SOUS-TYPE DE LGMD SUR LEQUEL VOTRE ORGANISATION SE CONCENTRE :\u00a0 <\/strong><\/p>\n<p>Nous nous concentrons sur la dystrophie musculaire des ceintures de type 2L (LGMD2L).<\/p>\n<p><strong>SI VOUS VOUS CONCENTREZ SUR UN SOUS-TYPE, EXISTE-T-IL UN REGISTRE ET COMMENT LES PATIENTS PEUVENT-ILS S'Y INSCRIRE ? <\/strong><\/p>\n<p>Oui, le registre des patients pour la LGMD2L est accessible sur notre site web \u00e0 l'adresse suivante <a href=\"http:\/\/www.lgmd2l-foundation.org\/patient-registration\">www.lgmd2l-foundation.org\/patient-registration<\/a><\/p>\n<p><strong>Votre organisation est-elle \u00e0 but non lucratif ? Si oui, de quel type :\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><\/p>\n<p>Oui, organisme de bienfaisance public bas\u00e9 aux \u00c9tats-Unis et exon\u00e9r\u00e9 d'imp\u00f4t en vertu de l'article 501 (c)(3).<\/p>\n<p><strong>CE QUI A INSPIR\u00c9 LA CR\u00c9ATION DE VOTRE ORGANISATION<\/strong>:<\/p>\n<p>Principalement, la n\u00e9cessit\u00e9 de d\u00e9velopper un registre de patients pour les personnes diagnostiqu\u00e9es avec la LGMD2L afin d'\u00eatre pr\u00e9par\u00e9 pour les essais cliniques, lorsqu'ils seront disponibles.<\/p>\n<p><strong>QUELLE EST LA MISSION DE VOTRE ORGANISATION :\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><\/p>\n<p>L'objectif de la Fondation LGMD2L est d'unir les personnes touch\u00e9es par cette maladie rare. Elle fournit \u00e9galement un forum ouvert pour se connecter, discuter et finalement construire une communaut\u00e9 de membres LGMD2L. Bien que notre maladie soit rare et mal comprise, nous avons cr\u00e9\u00e9 cette fondation afin de constituer une base de donn\u00e9es de patients atteints de LGMD2L en vue de futures recherches scientifiques et essais cliniques. La seule fa\u00e7on de faire \u00e9voluer les choses est d'unifier ceux qui veulent trouver un rem\u00e8de !<\/p>\n<p><strong>QUELS SONT LES SERVICES OFFERTS PAR VOTRE ORGANISATION :\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><\/p>\n<p>Registre, informations via le site web et les m\u00e9dias sociaux. Soutien en cas de besoin et mise en relation avec d'autres ressources communautaires.<\/p>\n<p><strong>DE QUOI VOTRE ORGANISATION EST-ELLE LA PLUS FI\u00c8RE ?\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><\/p>\n<p>Obtenir notre statut d'association \u00e0 but non lucratif et lancer le site web avec le registre.<\/p>\n<p><strong>Que voulez-vous que le monde sache \u00e0 propos de VOTRE ORGANISATION ?<\/strong>:<\/p>\n<p>Nous d\u00e9veloppons d'excellentes relations dans ce domaine et nous esp\u00e9rons cr\u00e9er un registre qui nous aidera lorsque les essais cliniques seront pr\u00eats \u00e0 d\u00e9marrer.<\/p>\n<p><strong>COMMENT LES GENS PEUVENT-ILS S'IMPLIQUER DANS LE SOUTIEN DE VOTRE ORGANISATION :\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>Notre site web contiendra des informations permettant de nous contacter et \u00e9ventuellement de faire des dons d\u00e9ductibles des imp\u00f4ts, dont nous aurons besoin pour rester en contact avec l'information lors des \u00e9v\u00e9nements et des conf\u00e9rences.<\/p>\n<p><strong>QUEL EST LE MEILLEUR MOYEN DE CONTACTER VOTRE ORGANISATION :\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><\/p>\n<p>Notre site web contient notre adresse \u00e9lectronique et notre num\u00e9ro de t\u00e9l\u00e9phone. N'h\u00e9sitez pas \u00e0 nous contacter \u00e0 tout moment. Vous pouvez \u00e9galement nous envoyer un message via Facebook ou Twitter.<\/p>\n<p><strong>Y A-T-IL AUTRE CHOSE QUE VOUS AIMERIEZ AJOUTER ?\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><\/p>\n<p>Nous nous r\u00e9jouissons \u00e0 l'id\u00e9e de r\u00e9ussir \u00e0 trouver des rem\u00e8des et des traitements pour la LGMD2L.<\/p>\n<p>\u00a0<\/p>\n<p>* Pour lire d'autres \"LGMD Spotlight Interviews\" ou pour vous porter volontaire pour une prochaine interview, veuillez consulter notre site web \u00e0 l'adresse suivante\u00a0 <a href=\"https:\/\/www.lgmd-info.org\/fr\/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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