{"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\/it\/lgmd2l\/2018\/08\/26\/lgmd2l-foundation\/","title":{"rendered":"ORGANIZZAZIONE: Fondazione 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>NOME DELL'ORGANIZZAZIONE<\/strong>:   Fondazione LGMD2L<\/p>\n<p><strong>SITO WEB:<\/strong>\u00a0 \u00a0 \u00a0<a href=\"http:\/\/LGMD2L-Foundation.org\">Fondazione 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>SU QUALE SOTTOTIPO DI LGMD SI CONCENTRA LA VOSTRA ORGANIZZAZIONE:\u00a0 <\/strong><\/p>\n<p>Ci concentriamo sulla distrofia muscolare degli arti di tipo 2L (LGMD2L).<\/p>\n<p><strong>SE CI SI CONCENTRA SU UN SOTTOTIPO, ESISTE UN REGISTRO E COME POSSONO ISCRIVERSI I PAZIENTI? <\/strong><\/p>\n<p>S\u00ec, il registro dei pazienti per la LGMD2L \u00e8 accessibile tramite il nostro sito web all'indirizzo <a href=\"http:\/\/www.lgmd2l-foundation.org\/patient-registration\">www.lgmd2l-foundation.org\/patient-registration<\/a><\/p>\n<p><strong>La vostra organizzazione \u00e8 una Non-Profit? Se s\u00ec, di che tipo:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><\/p>\n<p>S\u00ec, ente di beneficenza pubblico esente da imposte con sede negli Stati Uniti (501 (c)(3)).<\/p>\n<p><strong>COSA HA ISPIRATO LA CREAZIONE DELLA VOSTRA ORGANIZZAZIONE<\/strong>:<\/p>\n<p>In primo luogo, la necessit\u00e0 di sviluppare un registro dei pazienti per gli individui con diagnosi di LGMD2L al fine di essere preparati per gli studi clinici, quando saranno disponibili.<\/p>\n<p><strong>QUAL \u00c8 LA MISSIONE DELLA VOSTRA ORGANIZZAZIONE:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><\/p>\n<p>L'obiettivo della Fondazione LGMD2L \u00e8 quello di unire le persone affette da questa malattia rara. Inoltre, fornire un forum aperto per connettersi, discutere e infine costruire una comunit\u00e0 di membri della LGMD2L. Sebbene la nostra malattia sia rara e poco conosciuta, abbiamo creato questa fondazione per costruire un database di pazienti affetti da LGMD2L per future ricerche scientifiche e studi clinici. L'unico modo per ottenere un cambiamento \u00e8 quello di unire coloro che sono alla ricerca di una cura!<\/p>\n<p><strong>QUALI SERVIZI FORNISCE LA VOSTRA ORGANIZZAZIONE:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><\/p>\n<p>Registro, informazioni attraverso il sito web e i social media. Sostegno e collegamenti con altre risorse della comunit\u00e0.<\/p>\n<p><strong>DI COSA \u00c8 PI\u00d9 ORGOGLIOSA LA VOSTRA ORGANIZZAZIONE:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><\/p>\n<p>Ottenere lo status di ONLUS e avviare il sito web con il registro.<\/p>\n<p><strong>Cosa volete che il mondo sappia della vostra organizzazione?<\/strong>:<\/p>\n<p>Stiamo sviluppando ottimi contatti in questo settore e speriamo di costruire un registro che ci aiuti quando gli studi clinici saranno pronti.<\/p>\n<p><strong>COME SI PU\u00d2 PARTECIPARE AL SOSTEGNO DELLA VOSTRA ORGANIZZAZIONE:\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>Il nostro sito web conterr\u00e0 le informazioni per contattarci ed eventualmente per fare donazioni deducibili dalle tasse, di cui avremo bisogno per rimanere in contatto con le informazioni durante gli eventi e le conferenze.<\/p>\n<p><strong>QUAL \u00c8 IL MODO MIGLIORE PER CONTATTARE LA VOSTRA ORGANIZZAZIONE:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><\/p>\n<p>Il nostro sito web contiene il nostro indirizzo e-mail e il numero di telefono. Contattateci in qualsiasi momento. Potete anche inviarci un messaggio tramite Facebook o Twitter.<\/p>\n<p><strong>C'\u00c8 QUALCOS'ALTRO CHE VORREBBE AGGIUNGERE?\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><\/p>\n<p>Ci auguriamo di riuscire a ottenere cure e trattamenti per la LGMD2L.<\/p>\n<p>\u00a0<\/p>\n<p>* * * Per leggere altre \"interviste LGMD Spotlight\" o per proporsi come volontari per una prossima intervista, visitate il nostro sito web all'indirizzo\u00a0 <a href=\"https:\/\/www.lgmd-info.org\/it\/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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