{"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\/it\/organization-interview\/2019\/10\/22\/lgmd-1d-foundation\/","title":{"rendered":"ORGANIZZAZIONE: Fondazione LGMD-1D DNAJB6"},"content":{"rendered":"
\"\"<\/figure>\n\n\n\n

NOME DELL'ORGANIZZAZIONE<\/strong>: Fondazione LGMD-1D DNAJB6<\/p>\n\n\n\n

SITO 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

SU QUALE SOTTOTIPO DI LGMD SI CONCENTRA LA VOSTRA ORGANIZZAZIONE:   <\/strong><\/p>\n\n\n\n

LGMD-1D, anche se attualmente siamo un registro per le LGMD da 1A a 1H.<\/strong><\/p>\n\n\n\n

ESISTE UN REGISTRO DEI PAZIENTI DELLA LGMD?    <\/strong><\/p>\n\n\n\n

S\u00ec, \u00e8 possibile accedervi all'indirizzo  <\/strong>www.lgmd1d.org<\/a><\/strong><\/p>\n\n\n\n

La vostra organizzazione \u00e8 una\nNon-Profit? Se s\u00ec, di che tipo:         <\/strong><\/p>\n\n\n\n

S\u00ec, siamo un'organizzazione\nun'organizzazione 501 (c)(3) senza scopo di lucro<\/p>\n\n\n\n

COSA HA ISPIRATO LA\nLA CREAZIONE DELLA VOSTRA ORGANIZZAZIONE<\/strong>:<\/p>\n\n\n\n

La lunga storia della nostra famiglia sulla LGMD-ID e i 40 anni di ricerca di una cura! Siamo stati ispirati dal progetto GRASP-LGMD sponsorizzato dalla MDA.<\/p>\n\n\n\n

QUAL \u00c8 LA MISSIONE DELLA VOSTRA ORGANIZZAZIONE:<\/strong><\/p>\n\n\n\n

Fornire un registro internazionale per le forme autosomiche dominanti sottorappresentate di LGMD. Raccogliamo fondi attraverso eventi locali, Amazon Smile e donazioni online per coprire le spese di viaggio dei pazienti che ne hanno bisogno. Speriamo che l'organizzazione della nostra particolare condizione dominante possa accelerare la ricerca e una cura.<\/p>\n\n\n\n

QUALI SERVIZI\nLA VOSTRA ORGANIZZAZIONE FORNISCE:<\/strong><\/p>\n\n\n\n

La Fondazione LGMD-1D DNAJB6 si occupa dell'organizzazione, del reclutamento e dei finanziamenti per consentire ai pazienti di accedere ai centri di ricerca.<\/p>\n\n\n\n

DI CHE COSA LA VOSTRA\nORGANIZZAZIONE \u00c8 PI\u00d9 ORGOGLIOSA:<\/strong><\/p>\n\n\n\n

Abbiamo messo a disposizione un portale web e una comunit\u00e0 su Facebook per consentire alle persone di incontrarsi e condividere le proprie esperienze. Abbiamo raccolto fondi sufficienti a compensare in modo significativo le spese di viaggio di chi ne ha bisogno.<\/p>\n\n\n\n

Per le persone affette da una malattia orfana, fornendo una comunit\u00e0, un registro e una voce a coloro che si sentono abbandonati.<\/p>\n\n\n\n

COSA VOLETE CHE IL MONDO SAPPIA DELLA VOSTRA ORGANIZZAZIONE?<\/strong>?<\/p>\n\n\n\n

Se riusciremo a curare questa malattia orfana, molte altre malattie\nmalattie genetiche non correlate ne trarranno beneficio. Siamo\nsiamo qui per voi, approfittatene!<\/p>\n\n\n\n

COME SI PU\u00d2 PARTECIPARE AL SOSTEGNO DELLA VOSTRA ORGANIZZAZIONE?<\/strong><\/p>\n\n\n\n

Consultare il nostro sito web: www.lgmd1d.org<\/a>  Considerate una donazione sul sito web per coloro\nmeno fortunati. Promuovete il nostro\nsito, la nostra missione e le donazioni oppure acquistate su Amazon Smile e selezionate la Fondazione LGMD-1D DNAJB6\nFoundation come ente di beneficenza preferito.<\/p>\n\n\n\n

QUAL \u00c8 IL MODO MIGLIORE PER CONTATTARE LA VOSTRA ORGANIZZAZIONE?<\/strong><\/p>\n\n\n\n

Le nostre informazioni di contatto sono sul nostro sito web www.lgmd1d.org<\/a> o via e-mail: wslowery.57@lgmd1d.org<\/a><\/p>\n\n\n\n

C'\u00c8 QUALCOS'ALTRO CHE VORREBBE AGGIUNGERE?<\/strong><\/p>\n\n\n\n

Si tratta di un lungo viaggio che tra cinque anni dar\u00e0 i suoi frutti. Desideriamo ringraziare il personale di ricerca e di supporto della Clinica Neuromuscolare della Washington University di St Louis, senza il quale tutto questo non sarebbe stato possibile. Grazie, 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\/it\/organization-interview\/2019\/10\/22\/lgmd-1d-foundation\/\" \/>\n<meta property=\"og:locale\" content=\"it_IT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"ORGANIZATION: LGMD-1D DNAJB6 Foundation - 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