{"id":2317,"date":"2018-10-29T13:58:32","date_gmt":"2018-10-29T18:58:32","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=2317"},"modified":"2018-10-29T13:58:32","modified_gmt":"2018-10-29T18:58:32","slug":"organization-lgmd2i-research-fund","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/fr\/lgmd2i\/2018\/10\/29\/organization-lgmd2i-research-fund\/","title":{"rendered":"ORGANISATION : Fonds de recherche LGMD2i"},"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\/10\/LGMD2i-Research-Fund.png\" alt=\"\" class=\"lazyload wp-image-2316\"\/><\/figure>\n\n\n<p><strong>NOM DE L'ORGANISATION<\/strong>:         Fonds de recherche LGMD2i<\/p>\n<p><strong>SITE WEB :<\/strong>\u00a0 \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <u><a href=\"http:\/\/www.lgmd2ifund.org\/\" target=\"_blank\" rel=\"noopener noreferrer\">http:\/\/www.lgmd2ifund.org\/<\/a><\/u><\/p>\n<p><strong>FACEBOOK :\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong> <a href=\"https:\/\/www.facebook.com\/jeanpierre.laurent.58173\" target=\"_blank\" rel=\"noopener noreferrer\">https:\/\/www.facebook.com\/jeanpierre.laurent.58173<\/a><\/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 exclusivement sur le LGMD2I<\/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>Nous connaissons un registre : le Global FKRP Registry (https:\/\/www.fkrp-registry.org\/). Bien qu'il soit bas\u00e9 au Royaume-Uni, il s'agit d'un registre international, adapt\u00e9 \u00e0 la nature des maladies rares. La LGMD2I est une maladie tr\u00e8s rare, ce qui signifie que le nombre de personnes qui en sont atteintes est faible du point de vue des d\u00e9veloppeurs de m\u00e9dicaments. Les \u00e9tudes cliniques avanc\u00e9es n\u00e9cessitant un grand nombre de participants, l'existence d'un registre mondial permettra d'identifier un grand nombre de participants potentiels et d'augmenter les chances de r\u00e9ussite des essais indispensables. Nous soutenons financi\u00e8rement ce registre depuis de nombreuses ann\u00e9es et il devient un atout majeur pour la communaut\u00e9 LGMD2I.<\/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, nous sommes une fondation priv\u00e9e \u00e0 but non lucratif.<\/p>\n<p><strong>CE QUI A INSPIR\u00c9 LA CR\u00c9ATION DE VOTRE ORGANISATION<\/strong>:<\/p>\n<p>Les personnes atteintes de LGMD2I ont jou\u00e9 un r\u00f4le d\u00e9terminant dans la d\u00e9finition de notre objectif et de notre mission.<\/p>\n<p><strong>Quelle est la mission de votre organisation ?<\/strong><\/p>\n<p>Trouver un rem\u00e8de et aider les personnes atteintes de 2I \u00e0 maintenir leur qualit\u00e9 de vie.<\/p>\n<p><strong>QUELS SONT LES SERVICES OFFERTS PAR VOTRE ORGANISATION :<\/strong><\/p>\n<p>Nous ne fournissons pas de services. Nous finan\u00e7ons la recherche et aidons \u00e0 mettre les gens en contact avec des informations sur la maladie et les soins m\u00e9dicaux.<\/p>\n<p><strong>DE QUOI VOTRE ORGANISATION EST-ELLE LA PLUS FI\u00c8RE ?<\/strong><\/p>\n<p>Nous avons financ\u00e9 le lancement de programmes dans tous les principaux domaines de la th\u00e9rapie (th\u00e9rapie g\u00e9nique, cellules souches, ...), du diagnostic et des outils de recherche (mod\u00e8le de souris, registre, ...). Gr\u00e2ce \u00e0 notre implication, le nombre de chercheurs en LGMD2I n'a cess\u00e9 de cro\u00eetre dans toutes les r\u00e9gions du monde. Il \u00e9tait important de cr\u00e9er une certaine masse critique de groupes de recherche, il est maintenant important de la maintenir...<\/p>\n<p><strong>Que voulez-vous que le monde sache \u00e0 propos de VOTRE ORGANISATION ?<\/strong>:<\/p>\n<p>Nous finan\u00e7ons tous les projets de recherche sur la LGMD2I qui peuvent nous rapprocher d'un rem\u00e8de et nous soutenons le diagnostic \u00e0 grande \u00e9chelle. Nous pensons que le traitement appropri\u00e9 pour la LGMD2I sera une combinaison de modalit\u00e9s qui corrigeront le g\u00e8ne d\u00e9fectueux et aideront \u00e0 r\u00e9parer les dommages caus\u00e9s aux muscles. Tout laboratoire disposant d'un savoir-faire en mati\u00e8re de recherche et de technologies susceptibles d'\u00eatre appliqu\u00e9es \u00e0 la mise au point d'un traitement pour la LGMD2I est invit\u00e9 \u00e0 nous contacter.<\/p>\n<p><strong>COMMENT LES GENS PEUVENT-ILS S'IMPLIQUER DANS LE SOUTIEN DE VOTRE ORGANISATION :<\/strong><\/p>\n<p>Toute personne disposant d'informations sur la maladie ou int\u00e9ress\u00e9e par la recherche d'un rem\u00e8de est invit\u00e9e \u00e0 nous contacter.<\/p>\n<p><strong>QUEL EST LE MEILLEUR MOYEN DE CONTACTER VOTRE ORGANISATION :<\/strong><\/p>\n<p>Pour plus d'informations, veuillez contacter  Dr. Jean-Pierre Laurent, Charg\u00e9 de programme par email : <a href=\"mailto:jpl@lgmd2ifund.org\" target=\"_blank\" rel=\"noopener noreferrer\">jpl@lgmd2ifund.org<\/a><\/p>\n<p><strong>\u00a0<\/strong><\/p>","protected":false},"excerpt":{"rendered":"<p>NAME OF ORGANIZATION:\u00a0 \u00a0\u00a0\u00a0\u00a0\u00a0 \u00a0LGMD2i Research Fund WEBSITE:\u00a0 \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 http:\/\/www.lgmd2ifund.org\/ [&hellip;]<\/p>","protected":false},"author":1,"featured_media":2316,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[94,35,95],"tags":[],"class_list":["post-2317","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-organization-interview","category-lgmd2i","category-organization"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - 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