{"id":2317,"date":"2018-10-29T13:58:32","date_gmt":"2018-10-29T18:58:32","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=2317"},"modified":"2018-10-29T13:58:32","modified_gmt":"2018-10-29T18:58:32","slug":"organization-lgmd2i-research-fund","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/it\/lgmd2i\/2018\/10\/29\/organization-lgmd2i-research-fund\/","title":{"rendered":"ORGANIZZAZIONE: Fondo di ricerca LGMD2i"},"content":{"rendered":"
\"\"<\/figure>\n\n\n

NOME DELL'ORGANIZZAZIONE<\/strong>: Fondo di ricerca LGMD2i<\/p>\n

SITO WEB:<\/strong>\u00a0 \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 http:\/\/www.lgmd2ifund.org\/<\/a><\/u><\/p>\n

FACEBOOK:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong> https:\/\/www.facebook.com\/jeanpierre.laurent.58173<\/a><\/p>\n

SU QUALE SOTTOTIPO DI LGMD SI CONCENTRA LA VOSTRA ORGANIZZAZIONE:\u00a0 <\/strong><\/p>\n

Ci concentriamo esclusivamente su LGMD2I<\/p>\n

SE CI SI CONCENTRA SU UN SOTTOTIPO, ESISTE UN REGISTRO E COME POSSONO ISCRIVERSI I PAZIENTI? <\/strong><\/p>\n

Siamo a conoscenza di un registro: il Global FKRP Registry (https:\/\/www.fkrp-registry.org\/). Pur avendo sede nel Regno Unito, si tratta di un registro internazionale, adattato alla natura delle malattie rare. La LGMD2I \u00e8 una malattia molto rara, il che significa che il numero di persone che ne sono affette \u00e8 esiguo dal punto di vista degli sviluppatori di farmaci. Poich\u00e9 gli studi clinici avanzati richiedono molti partecipanti, avere un registro globale aiuter\u00e0 a identificare un numero significativo di potenziali partecipanti e ad aumentare le possibilit\u00e0 di arruolamento in studi molto necessari. Abbiamo sostenuto finanziariamente questo registro per molti anni e sta diventando una grande risorsa per la comunit\u00e0 LGMD2I.<\/p>\n

La vostra organizzazione \u00e8 una Non-Profit? Se s\u00ec, di che tipo:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><\/p>\n

S\u00ec, siamo una fondazione privata senza scopo di lucro.<\/p>\n

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

Le persone con LGMD2I sono state determinanti nel definire il nostro obiettivo e la nostra missione.<\/p>\n

qual \u00e8 la missione della vostra organizzazione?<\/strong><\/p>\n

Trovare una cura e aiutare le persone affette da 2I a mantenere la loro qualit\u00e0 di vita.<\/p>\n

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

Non forniamo servizi. Finanziamo la ricerca e aiutiamo le persone a trovare informazioni sulla malattia e sulle cure mediche.<\/p>\n

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

Abbiamo finanziato l'avvio di programmi in tutti i principali campi terapeutici (terapia genica, cellule staminali, ...), diagnostici e strumenti di ricerca (modello murino, registro, ...). Grazie al nostro coinvolgimento, il numero di ricercatori nella LGMD2I \u00e8 cresciuto costantemente in tutte le regioni del mondo. \u00c8 stato importante creare una certa massa critica di gruppi di ricerca; ora \u00e8 importante mantenerla...<\/p>\n

Cosa volete che il mondo sappia della vostra organizzazione?<\/strong>:<\/p>\n

Finanziamo qualsiasi progetto di ricerca sulla LGMD2I che possa avvicinarci a una cura e sosteniamo la diagnosi su larga scala. Riteniamo che il trattamento\/cura appropriato per la 2I sar\u00e0 una combinazione di modalit\u00e0 che correggeranno il gene difettoso e aiuteranno a revertire i danni causati ai muscoli. Tutti i laboratori che dispongono di know-how di ricerca e di tecnologie che possono essere applicate allo sviluppo di un trattamento per la LGMD2I dovrebbero contattarci.<\/p>\n

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

Chiunque abbia informazioni sulla malattia o sia interessato a trovare una cura \u00e8 invitato a mettersi in contatto con noi.<\/p>\n

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

Per ulteriori informazioni, contattare: Dr. Jean-Pierre Laurent, Program Officer via e-mail: jpl@lgmd2ifund.org<\/a><\/p>\n

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

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