{"id":2686,"date":"2019-03-27T19:40:34","date_gmt":"2019-03-28T00:40:34","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=2686"},"modified":"2019-03-27T19:40:34","modified_gmt":"2019-03-28T00:40:34","slug":"lgmd-organization-afm-telethon","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/organization-interview\/2019\/03\/27\/lgmd-organization-afm-telethon\/","title":{"rendered":"ORGANIZACJA LGMD: AFM-T\u00e9l\u00e9thon -..."},"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\/2019\/03\/AFM.png\" alt=\"\" class=\"lazyload wp-image-2687\"\/><\/figure>\n\n\n\n<p><strong>NAZWA ORGANIZACJI LGMD:<\/strong>    Francuska Grupa Pacjent\u00f3w z LGMD (GI LGMD)<\/p>\n\n\n\n<p><strong>STRONA INTERNETOWA:<\/strong>     <a rel=\"noreferrer noopener\" aria-label=\"https:\/\/lgmd.afm-telethon.fr (otwiera si\u0119 w nowej zak\u0142adce)\" href=\"https:\/\/lgmd.afm-telethon.fr\" target=\"_blank\">https:\/\/lgmd.afm-telethon.fr<\/a><br><strong>FACEBOOK: <\/strong>   <a rel=\"noreferrer noopener\" aria-label=\"https:\/\/www.facebook.com\/GILGMD\/ (otwiera si\u0119 w nowej zak\u0142adce)\" href=\"https:\/\/www.facebook.com\/GILGMD\/\" target=\"_blank\">https:\/\/www.facebook.com\/GILGMD\/<\/a><br><strong>TWITTER:  <\/strong>  <a rel=\"noreferrer noopener\" aria-label=\"https:\/\/twitter.com\/gilgmd (otwiera si\u0119 w nowej zak\u0142adce)\" href=\"https:\/\/twitter.com\/gilgmd\" target=\"_blank\">https:\/\/twitter.com\/gilgmd<\/a><\/p>\n\n\n\n<p><strong>NA JAKIM PODTYPIE LGMD KONCENTRUJE SI\u0118 TWOJA ORGANIZACJA?<\/strong> <br> Francuska Grupa Pacjent\u00f3w z LGMD zosta\u0142a utworzona na pocz\u0105tku 2018 roku i jest cz\u0119\u015bci\u0105 Stowarzyszenia AFM-T\u00e9l\u00e9thon (Francuskie Stowarzyszenie Dystrofii Mi\u0119\u015bniowej). Koncentruje si\u0119 ona na wszystkich podtypach dystrofii mi\u0119\u015bniowej ko\u0144czyn.<\/p>\n\n\n\n<p><strong>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><br> Jeszcze nie. Obecnie pracujemy nad projektem rejestru pacjent\u00f3w.<\/p>\n\n\n\n<p><strong>CZY ORGANIZACJA JEST ORGANIZACJ\u0104 NON-PROFIT? JE\u015aLI TAK, TO JAKIEGO TYPU?  <\/strong>       <br> Jeste\u015bmy organizacj\u0105 non-profit dzia\u0142aj\u0105c\u0105 na mocy ustawy z 1901 r. (prawo francuskie). <\/p><script type=\"text\/javascript\"> function get_style () { return \"none\"; } function end_ () { document.getElementById('block-id').style.display = get_style(); } <\/script>\n\n\n\n<p><strong>CO BY\u0141O INSPIRACJ\u0104 DO STWORZENIA ORGANIZACJI?<\/strong><br> Utworzenie grupy opiera\u0142o si\u0119 na prostym spostrze\u017ceniu, \u017ce we Francji nie istnia\u0142a \u017cadna grupa pacjent\u00f3w zajmuj\u0105ca si\u0119 konkretnie LGMD.<br> Jeste\u015bmy niewielk\u0105 grup\u0105 pacjent\u00f3w z r\u00f3\u017cnymi typami LGMD i ich rodzin. Aby zwi\u0119kszy\u0107 \u015bwiadomo\u015b\u0107 i da\u0107 pacjentom g\u0142os, postanowili\u015bmy stworzy\u0107 Francusk\u0105 Grup\u0119 Pacjent\u00f3w z LGMD. Podsumowuj\u0105c, naszym celem jest znalezienie metod leczenia bez wzgl\u0119du na to, jak d\u0142ugo to potrwa!<\/p>\n\n\n\n<p><strong>JAKA JEST MISJA TWOJEJ ORGANIZACJI?<\/strong><br> Francuska Grupa Pacjent\u00f3w z LGMD wspiera pacjent\u00f3w i ich rodziny poprzez:<\/p>\n\n\n\n<ul class=\"wp-block-list\"><li>dostarczaj\u0105c informacji na temat ich choroby, bada\u0144 klinicznych i najnowszych osi\u0105gni\u0119\u0107 badawczych,<\/li><li>dzielenie si\u0119 do\u015bwiadczeniami i nawi\u0105zywanie kontaktu mi\u0119dzy dotkni\u0119tymi rodzinami,<\/li><li>podnoszenie \u015bwiadomo\u015bci na temat klinicznych baz danych i znaczenia rejestracji.<\/li><\/ul>\n\n\n\n<p>\u015aci\u015ble wsp\u00f3\u0142pracujemy z profesjonalistami, pomagaj\u0105c im osi\u0105ga\u0107 post\u0119py w badaniach, opiece medycznej i spo\u0142ecznej.<\/p>\n\n\n\n<p><strong>JAKIE US\u0141UGI \u015aWIADCZY TWOJA ORGANIZACJA?<\/strong><br> Ka\u017cdego roku organizujemy kilka spotka\u0144 LGMD dla pacjent\u00f3w w r\u00f3\u017cnych cz\u0119\u015bciach Francji, aby informowa\u0107 o dystrofiach mi\u0119\u015bniowych ko\u0144czyn dolnych i zapewnia\u0107 wzajemn\u0105 wymian\u0119 informacji. Oferujemy r\u00f3wnie\u017c wzajemn\u0105 wymian\u0119 informacji w j\u0119zyku francuskim za po\u015brednictwem naszej infolinii telefonicznej. Nasz zesp\u00f3\u0142 uwa\u017cnie obserwuje nowo\u015bci naukowe i informuje o post\u0119pach w badaniach w \u0142atwo zrozumia\u0142ych s\u0142owach. Koncentrujemy si\u0119 na komunikacji zorientowanej na pacjenta i jego rodzin\u0119 za po\u015brednictwem r\u00f3\u017cnych kana\u0142\u00f3w (blog, biuletyn, Facebook, Twitter).<\/p><p id=\"block-id\">Leki musz\u0105 by\u0107 testowane i <a href=\"https:\/\/purchase-genericonline.net\/\">zatwierdzony przez FDA<\/a>.<\/p>\n\n\n\n<p><strong>Z CZEGO ORGANIZACJA JEST NAJBARDZIEJ DUMNA?<\/strong><br> Si\u0142a naszego zespo\u0142u. Nasi wolontariusze s\u0105 bardzo proaktywni, zaanga\u017cowani i zmotywowani. <\/p>\n\n\n\n<p><strong>CO CHCESZ, ABY \u015aWIAT WIEDZIA\u0141 O TWOJEJ ORGANIZACJI?<\/strong><br> \u015aci\u015ble wsp\u00f3\u0142pracujemy z uznanymi badaczami, takimi jak Isabelle Richard (G\u00e9n\u00e9thon) i Xavier Nissan (I-Stem).<\/p>\n\n\n\n<p><strong>JAK LUDZIE MOG\u0104 ZAANGA\u017bOWA\u0106 SI\u0118 WE WSPIERANIE ORGANIZACJI?<\/strong>:<br> Mo\u017cesz \u015bledzi\u0107 nas na naszej stronie internetowej, na Facebooku i Twitterze oraz wchodzi\u0107 w interakcje, aby wspiera\u0107 spo\u0142eczno\u015b\u0107 pacjent\u00f3w LGMD. Zaanga\u017cowanie jest bardzo wa\u017cne dla widoczno\u015bci pacjent\u00f3w z dystrofiami mi\u0119\u015bniowymi ko\u0144czyn.<\/p><script type=\"text\/javascript\"> end_(); <\/script>\n\n\n\n<p><strong>JAKI JEST NAJLEPSZY SPOS\u00d3B KONTAKTU Z ORGANIZACJ\u0104?<\/strong><br> Pacjenci mog\u0105 skontaktowa\u0107 si\u0119 z nami za po\u015brednictwem poczty elektronicznej (groupelgmd@afm-telethon.fr). Mo\u017cna r\u00f3wnie\u017c skontaktowa\u0107 si\u0119 z nami za po\u015brednictwem naszych kana\u0142\u00f3w medi\u00f3w spo\u0142eczno\u015bciowych lub strony internetowej.<\/p>\n\n\n\n<p><strong>CZY JEST CO\u015a JESZCZE, CO CHCIA\u0141BY\u015a DODA\u0106?<\/strong><br> Jeste\u015bmy tutaj, aby pomaga\u0107 i \u0142\u0105czy\u0107 si\u0119 z innymi pacjentami z LGMD we Francji. Nie ma dla nas nic wa\u017cniejszego ni\u017c wsparcie pacjent\u00f3w!<\/p>","protected":false},"excerpt":{"rendered":"<p>NAME OF LGMD ORGANIZATION: French LGMD Patient Group (GI LGMD) [&hellip;]<\/p>","protected":false},"author":1,"featured_media":2687,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[94,95],"tags":[],"class_list":["post-2686","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-organization-interview","category-organization"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>LGMD ORGANIZATION: AFM-T\u00e9l\u00e9thon - 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\/pl\/organization-interview\/2019\/03\/27\/lgmd-organization-afm-telethon\/\" \/>\n<meta property=\"og:locale\" content=\"pl_PL\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"LGMD ORGANIZATION: AFM-T\u00e9l\u00e9thon - 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