{"id":3076,"date":"2019-10-22T10:36:44","date_gmt":"2019-10-22T15:36:44","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=3076"},"modified":"2019-10-22T10:36:44","modified_gmt":"2019-10-22T15:36:44","slug":"lgmd-1d-foundation","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/fr\/organization-interview\/2019\/10\/22\/lgmd-1d-foundation\/","title":{"rendered":"ORGANISATION : Fondation LGMD-1D DNAJB6"},"content":{"rendered":"
\"\"<\/figure>\n\n\n\n

NOM DE L'ORGANISATION<\/strong>: Fondation LGMD-1D DNAJB6<\/p>\n\n\n\n

SITE WEB :<\/strong>              www.lgmd1d.org<\/a> <\/p>\n\n\n\n

FACEBOOK :        <\/strong>https:\/\/www.facebook.com\/LGMD.1D<\/a> <\/p>\n\n\n\n

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

LGMD-1D, bien que nous soyons actuellement un registre pour les LGMD 1A \u00e0 1H.<\/strong><\/p>\n\n\n\n

EXISTE-T-IL UN REGISTRE DES PATIENTS ATTEINTS DE LGMD ?    <\/strong><\/p>\n\n\n\n

Oui, il est accessible \u00e0 l'adresse suivante  <\/strong>www.lgmd1d.org<\/a><\/strong><\/p>\n\n\n\n

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

Oui, nous sommes une\nune organisation \u00e0 but non lucratif 501 (c)(3)<\/p>\n\n\n\n

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

La longue histoire de notre famille avec la LGMD-ID et la recherche d'un rem\u00e8de depuis 40 ans ! Nous avons \u00e9t\u00e9 inspir\u00e9s par le projet GRASP-LGMD parrain\u00e9 par la MDA.<\/p>\n\n\n\n

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

Fournir un registre international pour les formes autosomiques dominantes sous-repr\u00e9sent\u00e9es de LGMD. Nous collectons des fonds par le biais d'\u00e9v\u00e9nements locaux, d'Amazon Smile et de dons en ligne pour couvrir les frais de d\u00e9placement des patients dans le besoin. Nous esp\u00e9rons qu'en organisant notre condition dominante particuli\u00e8re, nous pourrons acc\u00e9l\u00e9rer la recherche et la d\u00e9couverte d'un rem\u00e8de.<\/p>\n\n\n\n

QUELS SONT LES SERVICES OFFERTS PAR\nVOTRE ORGANISATION FOURNIT-ELLE :<\/strong><\/p>\n\n\n\n

La Fondation LGMD-1D DNAJB6 assure l'organisation, le recrutement et le financement afin que les patients puissent acc\u00e9der aux centres de recherche.<\/p>\n\n\n\n

QU'EST-CE QUE VOTRE\nORGANISATION EST LA PLUS FI\u00c8RE :<\/strong><\/p>\n\n\n\n

Nous avons mis en place un portail web et une communaut\u00e9 Facebook pour permettre aux gens de se rencontrer et de partager leurs exp\u00e9riences. Nous avons collect\u00e9 suffisamment d'argent pour compenser de mani\u00e8re significative les frais de voyage des personnes dans le besoin.<\/p>\n\n\n\n

Pour les personnes atteintes d'une maladie orpheline, fournir une communaut\u00e9, un registre et une voix \u00e0 ceux qui se sentent laiss\u00e9s pour compte.<\/p>\n\n\n\n

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

Si nous parvenons \u00e0 gu\u00e9rir cette maladie orpheline, de nombreuses autres maladies g\u00e9n\u00e9tiques non apparent\u00e9es en b\u00e9n\u00e9ficieront.\nmaladies g\u00e9n\u00e9tiques non apparent\u00e9es. Nous sommes l\u00e0 pour vous.\npour vous, profitez-en !<\/p>\n\n\n\n

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

Veuillez consulter notre site web : www.lgmd1d.org<\/a>  Envisagez de faire un don sur le site web pour les\nmoins fortun\u00e9s. Faites la promotion de notre\nnotre site, notre mission et faites un don ou achetez sur Amazon Smile et s\u00e9lectionnez la Fondation LGMD-1D DNAJB6\ncomme organisme de bienfaisance.<\/p>\n\n\n\n

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

Nos coordonn\u00e9es se trouvent sur notre site web www.lgmd1d.org<\/a> ou par courriel : wslowery.57@lgmd1d.org<\/a><\/p>\n\n\n\n

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

Il s'agit d'un long voyage et, dans cinq ans, tout cela portera ses fruits. Nous tenons \u00e0 remercier le personnel de recherche et de soutien de la clinique neuromusculaire de l'universit\u00e9 Washington St Louis, sans qui tout cela ne serait pas possible. Merci, William S Lowery, MD<\/p>","protected":false},"excerpt":{"rendered":"

NAME OF ORGANIZATION:         LGMD-1D DNAJB6 Foundation WEBSITE:              www.lgmd1d.org FACEBOOK:        […]<\/p>","protected":false},"author":1,"featured_media":3077,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[102,94,104,95],"tags":[],"class_list":["post-3076","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-lgmd-d1-dnajb6-related","category-organization-interview","category-lgmd1d","category-organization"],"acf":[],"yoast_head":"\nORGANIZATION: LGMD-1D DNAJB6 Foundation - 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\/2019\/10\/22\/lgmd-1d-foundation\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"ORGANIZATION: LGMD-1D DNAJB6 Foundation - 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