{"id":2615,"date":"2019-01-27T15:17:42","date_gmt":"2019-01-27T21:17:42","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=2615"},"modified":"2019-01-27T15:17:42","modified_gmt":"2019-01-27T21:17:42","slug":"conquistando-escalones","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/fr\/organization-interview\/2019\/01\/27\/conquistando-escalones\/","title":{"rendered":"ORGANISATION : Conquistando Escalones"},"content":{"rendered":"
\"\"<\/figure>\n\n\n\n

NOM DE L'ORGANISATION<\/strong>: CONQUISTANDO ESCALONES<\/p>\n\n\n\n

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

FACEBOOK :        <\/strong> www.facebook.com\/conquistandoescalones<\/a><\/p>\n\n\n\n

TWITTER :             <\/strong>@AceDistrofia<\/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

Nous nous concentrons sur la dystrophie musculaire des ceintures de type 1F (LGMD1F).  <\/strong><\/p>\n\n\n\n

SI VOUS VOUS CONCENTREZ SUR UN SOUS-TYPE, EXISTE-T-IL UN REGISTRE ET COMMENT LES PATIENTS PEUVENT-ILS Y PARTICIPER ?\nEXISTE-T-IL UN REGISTRE ET COMMENT LES PATIENTS PEUVENT-ILS S'Y INSCRIRE ? <\/strong><\/p>\n\n\n\n

Oui, nous avons cr\u00e9\u00e9 un registre des patients et les patients peuvent contacter nous<\/g> en envoyant un courriel \u00e0 conquistandoescalones@gmail.com<\/a> <\/p>\n\n\n\n

VOTRE ORGANISATION EST-ELLE \u00c0 BUT NON LUCRATIF ? SI OUI, DE QUEL TYPE :         <\/strong><\/p>\n\n\n\n

Oui, nous sommes enregistr\u00e9s en\nEspagne et en Italie. <\/p>\n\n\n\n

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

L'association a \u00e9t\u00e9\nLa cr\u00e9ation de l'Association est n\u00e9e de la n\u00e9cessit\u00e9 de faire conna\u00eetre notre maladie et de trouver les fonds n\u00e9cessaires \u00e0 la recherche.\ntrouver les fonds n\u00e9cessaires \u00e0 la recherche.\nElle a \u00e9t\u00e9 fond\u00e9e par des personnes atteintes de dystrophie musculaire des ceintures\n1F (LGMD-1F) en 2015 parce que cette ann\u00e9e-l\u00e0, on a d\u00e9couvert que la mutation du g\u00e8ne qui cause la LGMD-1F a \u00e9t\u00e9 d\u00e9tect\u00e9e.\nmutation du g\u00e8ne \u00e0 l'origine de la LGMD1F immunise les personnes atteintes contre le sida et leur permet d'\u00eatre la porte d'entr\u00e9e d'une nouvelle g\u00e9n\u00e9ration de malades.\nles immunise contre le sida et fait d'elles la porte d'entr\u00e9e d'un \u00e9ventuel rem\u00e8de \u00e0 cette pand\u00e9mie mondiale.<\/p>\n\n\n\n

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

Notre mission est de sensibiliser le public aux maladies rares et \u00e0 l'importance de leur \u00e9tude. Nous constituons \u00e9galement une base de donn\u00e9es de patients atteints de LGMD1F pour les recherches scientifiques que nous finan\u00e7ons. Nous mettons en contact les laboratoires de recherche qui \u00e9tudient la LGMD1F. Nous cherchons constamment \u00e0 collecter des fonds pour financer la recherche. Aidez-nous \u00e0 marcher, aidez-nous \u00e0 vivre ! Ensemble, nous pouvons y arriver. \u00a0<\/p>\n\n\n\n

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

Nous apportons notre soutien aux\npatients atteints de LGMD1F et d'autres sous-types de LGMD, et nous tenons \u00e0 jour le registre des patients atteints de LGMD1F.\nLGMD1F. En outre, nous sommes constamment en\navec les laboratoires de recherche. <\/p>\n\n\n\n

Nous nous concentrons principalement\nsur la recherche et le d\u00e9veloppement de traitements, plut\u00f4t que sur les services aux patients.  <\/p>\n\n\n\n

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

 En trois ans, nous avons pu financer de nouvelles \u00e9tudes de recherche sur la LGMD1F, qui avaient \u00e9t\u00e9 interrompues auparavant.\n\u00e9tudes de recherche sur la LGMD1F, qui avaient \u00e9t\u00e9 interrompues auparavant. <\/strong><\/p>\n\n\n\n

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

Nous finan\u00e7ons de nombreuses\napproches diff\u00e9rentes, y compris CRISPR et la r\u00e9orientation de m\u00e9dicaments d\u00e9j\u00e0 sur le march\u00e9 pour d'autres maladies.\nd'autres maladies. <\/p>\n\n\n\n

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

Les gens peuvent nous aider\n\u00e0 collecter des fonds pour la recherche en organisant des \u00e9v\u00e9nements, en faisant un don ou d'autres mani\u00e8res\nd'autres fa\u00e7ons (voir le lien vers notre site web\nhttp:\/\/www.conquistandoescalones.org\/web\/en\/how-to-help-us\/)<\/p>\n\n\n\n

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

Vous pouvez nous contacter \u00e0 l'adresse suivante\nconquistandoescalones@gmail.com ou nous envoyer un message via Facebook.\n<\/p>\n\n\n\n

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

\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\nSi vous avez un diagnostic de LGMD1F, contactez-nous !\n\n\n\n<\/p>","protected":false},"excerpt":{"rendered":"

NAME OF ORGANIZATION:          CONQUISTANDO ESCALONES WEBSITE:              www.conquistandoescalones.org FACEBOOK:        […]<\/p>","protected":false},"author":1,"featured_media":2614,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[94,101,95],"tags":[],"class_list":["post-2615","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-organization-interview","category-lgmd1f","category-organization"],"acf":[],"yoast_head":"\nORGANIZATION: Conquistando Escalones - 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\/01\/27\/conquistando-escalones\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"ORGANIZATION: Conquistando Escalones - 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