{"id":2341,"date":"2018-11-18T21:09:52","date_gmt":"2018-11-19T03:09:52","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=2341"},"modified":"2018-11-18T21:09:52","modified_gmt":"2018-11-19T03:09:52","slug":"lgmd-organization-gfb-onlus","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/lgmd2e\/2018\/11\/18\/lgmd-organization-gfb-onlus\/","title":{"rendered":"ORGANIZACJA: GFB ONLUS"},"content":{"rendered":"
\"\"<\/figure>\n\n\n

NAZWA ORGANIZACJI<\/strong>: GFB ONLUS (GRUPPO FAMILIARI BETA-SARCOGLICANOPATIE ONLUS)<\/p>\n

STRONA INTERNETOWA:<\/strong>\u00a0 \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 www.lgmd2e.org<\/a><\/p>\n

FACEBOOK:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong>www.facebook.com\/gfbonlus-1045732368903903<\/a><\/p>\n

TWITTER:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong>twitter.com\/gfbonlus<\/a><\/p>\n

NA JAKIM PODTYPIE LGMD KONCENTRUJE SI\u0118 TWOJA ORGANIZACJA:\u00a0 <\/strong><\/p>\n

Skupiamy si\u0119 na dystrofii mi\u0119\u015bniowej obr\u0119czy ko\u0144czyny typu 2E (LGMD2E).<\/p>\n

JE\u015aLI KONCENTRUJESZ SI\u0118 NA PODTYPIE, CZY ISTNIEJE REJESTR I W JAKI SPOS\u00d3B PACJENCI MOG\u0104 DO NIEGO DO\u0141\u0104CZY\u0106? <\/strong><\/p>\n

Na naszej stronie internetowej zbieramy informacje dotycz\u0105ce os\u00f3b dotkni\u0119tych Lgmd2E- Lgmd2D- Lgmd2C - Lgmd2F, zgodnie z ustaw\u0105 o ochronie prywatno\u015bci. Naszym pierwszym celem jest opracowanie danych statystycznych, a w drugiej kolejno\u015bci chcieliby\u015bmy stworzy\u0107 rejestr pacjent\u00f3w z sarkoglikopati\u0105.<\/p>\n

Tutaj mo\u017cna zapozna\u0107 si\u0119 z naszymi statystykami pacjent\u00f3w:
http:\/\/www.beta-sarcoglicanopathy.org\/index.php?option=com_content&view=article&id=47&Itemid=53<\/p>\n

GFB liczy obecnie 403 pacjent\u00f3w dotkni\u0119tych sarkoglikanopati\u0105 (LGMD2C -2D - 2E -2F). Zach\u0119camy osoby, kt\u00f3re maj\u0105 dodatkowe informacje do udost\u0119pnienia, do przes\u0142ania nam tych informacji za po\u015brednictwem info@beta-sarcoglicanopatie.it<\/a> .<\/p>\n

Czy Twoja organizacja jest organizacj\u0105 non-profit? Je\u015bli tak, to jakiego typu:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><\/p>\n

Tak, jeste\u015bmy organizacj\u0105 non-profit. W dniu 27 lutego 2013 r. GFB Onlus zosta\u0142a oficjalnie utworzona we W\u0142oszech jako organizacja wolontariacka, zarejestrowana w prowincjonalnej sekcji regionalnego rejestru organizacji wolontariackich w Lombardii pod numerem SO-81. W 2014 roku zosta\u0142a r\u00f3wnie\u017c wpisana do regionalnego rejestru stowarzysze\u0144 solidarno\u015bci rodzinnej pod numerem 947.<\/p>\n

CO ZAINSPIROWA\u0141O POWSTANIE TWOJEJ ORGANIZACJI?<\/strong>:<\/p>\n

Przez lata do\u015bwiadczali\u015bmy choroby naszych dzieci, zdaj\u0105c sobie spraw\u0119, \u017ce nie by\u0142o dok\u0142adnych bada\u0144 naukowych i podej\u015b\u0107 terapeutycznych ukierunkowanych na t\u0119 chorob\u0119 (do 2012 r.). Byli\u015bmy ca\u0142kowicie pozostawieni sami sobie, a poza tym nie by\u0142o \u017cadnych stowarzysze\u0144 dla Lgmd2E.<\/p>\n

JAKA JEST MISJA ORGANIZACJI:<\/strong><\/p>\n

Gfb Onlus zosta\u0142 stworzony w celu finansowania projekt\u00f3w badawczych maj\u0105cych na celu leczenie tej choroby. Chce r\u00f3wnie\u017c by\u0107 sposobem na lepsze informowanie nas \/ ciebie o informacjach \/ nowo\u015bciach, kt\u00f3re nie s\u0105 \u0142atwe do znalezienia, a tak\u017ce o najbardziej aktualnych konkretnych dzia\u0142aniach badawczych dotycz\u0105cych tej konkretnej choroby. Nasz\u0105 misj\u0105 jest reprezentowanie os\u00f3b z Lgmd2E wobec instytucji, organizacji badawczych, innych stowarzysze\u0144 i pacjent\u00f3w. Rol\u0119 t\u0119 pe\u0142nimy do tej pory tylko my, poniewa\u017c nie istniej\u0105 \u017cadne inne grupy o podobnym celu - ani we W\u0142oszech, ani za granic\u0105. Ta strona internetowa i jej grupa samopomocy zosta\u0142y stworzone z ch\u0119ci nawi\u0105zania kontaktu z innymi rodzinami dotkni\u0119tymi t\u0105 chorob\u0105, aby dzieli\u0107 si\u0119 r\u00f3\u017cnymi aspektami codziennego \u017cycia z t\u0105 chorob\u0105, a tak\u017ce aspektami klinicznymi, prawnymi, logistycznymi i organizacyjnymi zwi\u0105zanymi z badaniami naukowymi i korzystaniem z r\u00f3\u017cnych pomocy. Naszym zamiarem jest zebranie pierwszych danych na temat tych pacjent\u00f3w, w perspektywie przysz\u0142ego rejestru pacjent\u00f3w i konkretnych bada\u0144 klinicznych.<\/p>\n

JAKIE US\u0141UGI \u015aWIADCZY TWOJA ORGANIZACJA:<\/strong><\/p>\n

2012: Od sierpnia 2012 roku rodziny GFB zdecydowa\u0142y si\u0119 rozpocz\u0105\u0107 pierwsze finansowanie projektu terapii genowej LGMD2E w Columbus Ohio przez prof. J. Mendella. Na dzie\u0144 dzisiejszy dokonano pi\u0119ciu wp\u0142at na \u0142\u0105czn\u0105 kwot\u0119 $ 1 300 000. 2017: Powstaje Myonexus Therapeutics Company, do kt\u00f3rej wchodzi GFB ONLUS. Celem sp\u00f3\u0142ki Myonexus Therapeutics jest opracowanie terapii genowej dystrofii mi\u0119\u015bniowej ko\u0144czyn dolnych (LGMD) typu 2B, 2C, 2D, 2E i 2L. http:\/\/myonexustx.com\/ 2018: GFB Onlus wzi\u0119\u0142a udzia\u0142 w podpisaniu umowy pomi\u0119dzy Sarepta i Myonexus, dwiema firmami biotechnologicznymi z siedzib\u0105 w Stanach Zjednoczonych. Inne nasze dzia\u0142ania to organizacja wycieczek w g\u00f3ry z krzes\u0142ami trekkingowymi i innymi zaj\u0119ciami sportowymi (podniebnymi) i rekreacyjnymi dla os\u00f3b niepe\u0142nosprawnych, organizacja corocznych spotka\u0144 rodzin GFB ONLUS oraz us\u0142ugi transportowe dla os\u00f3b niepe\u0142nosprawnych, r\u00f3wnie\u017c poprzez umowy z organami publicznymi, organizacja mi\u0119dzynarodowego kongresu naukowego dla LGMD2E i innych sarkoglikanopatii oraz wsparcie psychologiczne dla os\u00f3b niepe\u0142nosprawnych.<\/p>\n

Z CZEGO TWOJA ORGANIZACJA JEST NAJBARDZIEJ DUMNA?<\/strong><\/p>\n

Finansowanie fazy przedklinicznej projektu terapii genowej Lgmd2e koordynowanego przez prof. J. Mendella w Columbus Ohio USA ($ 1 300 000), uczestnictwo w Myonexus Therapeutics i umowa mi\u0119dzy Sarepta i Myonexus.<\/p>\n

Co chcesz, aby \u015bwiat dowiedzia\u0142 si\u0119 o TWOJEJ ORGANIZACJI?<\/strong>:<\/p>\n

Rozwijamy \u015bwietne kontakty w tym obszarze i mamy nadziej\u0119 zbudowa\u0107 rejestr, kt\u00f3ry pomo\u017ce nam, gdy badania kliniczne b\u0119d\u0105 gotowe do rozpocz\u0119cia.<\/p>\n

W JAKI SPOS\u00d3B LUDZIE MOG\u0104 ZAANGA\u017bOWA\u0106 SI\u0118 WE WSPIERANIE ORGANIZACJI:<\/strong><\/p>\n

Nasza strona internetowa b\u0119dzie zawiera\u0107 informacje umo\u017cliwiaj\u0105ce skontaktowanie si\u0119 z nami, a tak\u017ce przekazanie darowizny podlegaj\u0105cej odliczeniu od podatku.<\/p>\n

JAKI JEST NAJLEPSZY SPOS\u00d3B KONTAKTU Z ORGANIZACJ\u0104:<\/strong><\/p>\n

Prosimy o kontakt drog\u0105 mailow\u0105 na adres info@beta-sarcoglicanopatie.it<\/a> . Prosimy o kontakt w ka\u017cdej chwili. Zawsze mo\u017cesz te\u017c wys\u0142a\u0107 nam wiadomo\u015b\u0107 za po\u015brednictwem Facebooka lub Twittera.<\/p>\n

CZY JEST CO\u015a JESZCZE, CO CHCIA\u0141BY\u015a DODA\u0106?<\/strong><\/p>\n

Z niecierpliwo\u015bci\u0105 czekamy na sukces w uzyskaniu lek\u00f3w i terapii dla LGMD2E i innych podtyp\u00f3w LGMD.<\/p>\n

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

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