{"id":2341,"date":"2018-11-18T21:09:52","date_gmt":"2018-11-19T03:09:52","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=2341"},"modified":"2018-11-18T21:09:52","modified_gmt":"2018-11-19T03:09:52","slug":"lgmd-organization-gfb-onlus","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/fr\/lgmd2e\/2018\/11\/18\/lgmd-organization-gfb-onlus\/","title":{"rendered":"ORGANISATION : GFB ONLUS"},"content":{"rendered":"
\"\"<\/figure>\n\n\n

NOM DE L'ORGANISATION<\/strong>: GFB ONLUS (GRUPPO FAMILIARI BETA-SARCOGLICANOPATIE ONLUS)<\/p>\n

SITE WEB :<\/strong>\u00a0 \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 www.lgmd2e.org<\/a><\/p>\n

FACEBOOK :\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong>www.facebook.com\/gfbonlus-1045732368903903<\/a><\/p>\n

TWITTER :\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong>twitter.com\/gfbonlus<\/a><\/p>\n

QUEL EST LE SOUS-TYPE DE LGMD SUR LEQUEL VOTRE ORGANISATION SE CONCENTRE :\u00a0 <\/strong><\/p>\n

Nous nous concentrons sur la dystrophie musculaire des ceintures de type 2E (LGMD2E).<\/p>\n

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

Sur notre site web, nous recueillons des informations sur les personnes atteintes de Lgmd2E- Lgmd2D- Lgmd2C - Lgmd2F, conform\u00e9ment \u00e0 la loi sur la protection de la vie priv\u00e9e. Notre premier objectif est d'\u00e9laborer des donn\u00e9es statistiques et, dans un deuxi\u00e8me temps, de cr\u00e9er un registre des patients atteints de sarcoglycanopaties.<\/p>\n

Vous pouvez consulter ici nos statistiques sur les patients :
http:\/\/www.beta-sarcoglicanopathy.org\/index.php?option=com_content&view=article&id=47&Itemid=53<\/p>\n

Le GFB compte actuellement un total de 403 patients atteints de Sarcoglycanopathie (LGMD2C -2D - 2E -2F). Nous invitons les personnes qui ont des informations compl\u00e9mentaires \u00e0 nous communiquer, \u00e0 nous les faire parvenir par l'interm\u00e9diaire de info@beta-sarcoglicanopatie.it<\/a> .<\/p>\n

Votre organisation est-elle \u00e0 but non lucratif ? Si oui, de quel type :\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><\/p>\n

Oui, nous sommes une organisation \u00e0 but non lucratif. Le 27 f\u00e9vrier 2013, le GFB Onlus a \u00e9t\u00e9 officiellement cr\u00e9\u00e9 en Italie en tant qu'organisation b\u00e9n\u00e9vole, inscrite \u00e0 la section provinciale du registre r\u00e9gional des organisations b\u00e9n\u00e9voles de Lombardie n. SO-81. En 2014, il a \u00e9galement \u00e9t\u00e9 inscrit au registre r\u00e9gional des associations de solidarit\u00e9 familiale sous le num\u00e9ro 947.<\/p>\n

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

Au cours des ann\u00e9es o\u00f9 nous avons v\u00e9cu la maladie de nos enfants, nous nous sommes rendu compte qu'il n'y avait pas d'\u00e9tudes scientifiques pr\u00e9cises et d'approches th\u00e9rapeutiques cibl\u00e9es pour cette maladie (jusqu'en 2012). Nous \u00e9tions compl\u00e8tement livr\u00e9s \u00e0 nous-m\u00eames et de plus, il n'y avait pas d'associations pour la Lgmd2E.<\/p>\n

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

Le Gfb Onlus a \u00e9t\u00e9 cr\u00e9\u00e9 pour financer des projets de recherche visant \u00e0 traiter la maladie. Elle se veut \u00e9galement un moyen de nous\/vous tenir mieux inform\u00e9s des informations\/actualit\u00e9s difficiles \u00e0 trouver ainsi que des activit\u00e9s de recherche sp\u00e9cifiques les plus r\u00e9centes pour cette maladie particuli\u00e8re. Notre mission est de repr\u00e9senter les personnes atteintes de Lgmd2E, aupr\u00e8s des institutions, des organismes de recherche, des autres associations, des patients. Nous sommes les seuls \u00e0 jouer ce r\u00f4le, car il n'existe pas d'autres groupes ayant le m\u00eame objectif, ni en Italie, ni \u00e0 l'\u00e9tranger. Ce site et son groupe d'entraide sont n\u00e9s du d\u00e9sir d'entrer en contact avec d'autres familles touch\u00e9es par cette maladie, afin de partager les diff\u00e9rents aspects de la vie quotidienne avec cette maladie, ainsi que les aspects cliniques, juridiques, logistiques, organisationnels li\u00e9s \u00e0 la recherche scientifique et \u00e0 l'utilisation de divers moyens auxiliaires. Notre intention est de r\u00e9aliser une premi\u00e8re collecte de donn\u00e9es sur ces patients, en vue d'un futur registre de patients et d'essais cliniques sp\u00e9cifiques.<\/p>\n

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

2012 : Depuis le mois d'ao\u00fbt 2012, les familles de GFB ont d\u00e9cid\u00e9 de commencer \u00e0 financer le projet de th\u00e9rapie g\u00e9nique LGMD2E \u00e0 Columbus Ohio par le prof. J. Mendell. Cinq versements pour un total de $ 1.300.000 ont \u00e9t\u00e9 effectu\u00e9s \u00e0 ce jour. 2017 : La soci\u00e9t\u00e9 Myonexus Therapeutics est n\u00e9e et GFB ONLUS entre dans la soci\u00e9t\u00e9. L'objectif de la soci\u00e9t\u00e9 Myonexus Therapeutics est de d\u00e9velopper une th\u00e9rapie g\u00e9nique pour la dystrophie musculaire des ceintures (LGMD) de type 2B, 2C, 2D, 2E et 2L. http:\/\/myonexustx.com\/ 2018 : GFB Onlus a particip\u00e9 \u00e0 la signature de l'accord entre Sarepta et Myonexus, deux soci\u00e9t\u00e9s de biotechnologie ayant leur si\u00e8ge aux \u00c9tats-Unis. Nos autres activit\u00e9s sont l'organisation de voyages en montagne avec des chaises de trekking et d'autres activit\u00e9s sportives (ciel) et r\u00e9cr\u00e9atives pour les personnes handicap\u00e9es, l'organisation de r\u00e9unions annuelles des familles de GFB ONLUS, et des services de transport pour les personnes handicap\u00e9es, \u00e9galement par le biais d'accords avec des organismes publics, l'organisation d'un congr\u00e8s scientifique international pour LGMD2E et d'autres sarcoglycanopathies et un soutien psychologique pour les personnes handicap\u00e9es.<\/p>\n

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

Avoir financ\u00e9 la phase pr\u00e9-clinique du projet de th\u00e9rapie g\u00e9nique Lgmd2e coordonn\u00e9 par le Prof. J. Mendell \u00e0 Columbus Ohio USA ($ 1,300,000), avoir particip\u00e9 \u00e0 Myonexus Therapeutics et \u00e0 l'accord entre Sarepta et Myonexus.<\/p>\n

Que voulez-vous que le monde sache \u00e0 propos de VOTRE ORGANISATION ?<\/strong>:<\/p>\n

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

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

Notre site web contiendra des informations permettant de nous contacter et, \u00e9ventuellement, de faire des dons d\u00e9ductibles des imp\u00f4ts.<\/p>\n

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

Veuillez nous contacter par courrier \u00e9lectronique \u00e0 l'adresse suivante info@beta-sarcoglicanopatie.it<\/a> . N'h\u00e9sitez pas \u00e0 nous contacter \u00e0 tout moment. Vous pouvez \u00e9galement nous envoyer un message via Facebook ou Twitter.<\/p>\n

Y A-T-IL AUTRE CHOSE QUE VOUS AIMERIEZ AJOUTER ?<\/strong><\/p>\n

Nous nous r\u00e9jouissons \u00e0 l'id\u00e9e de r\u00e9ussir \u00e0 trouver des rem\u00e8des et des traitements pour le LGMD2E et d'autres sous-types de LGMD.<\/p>\n

\u00a0<\/p>","protected":false},"excerpt":{"rendered":"

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