{"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\/de\/lgmd2l\/2018\/08\/26\/lgmd2l-foundation\/","title":{"rendered":"ORGANISATION: Stiftung 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>NAME DER ORGANISATION<\/strong>:   LGMD2L-Stiftung<\/p>\n<p><strong>WEBSITE:<\/strong>\u00a0 \u00a0 \u00a0<a href=\"http:\/\/LGMD2L-Foundation.org\">LGMD2L-Stiftung.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>AUF WELCHEN UNTERTYP VON LGMD KONZENTRIERT SICH IHRE ORGANISATION:\u00a0 <\/strong><\/p>\n<p>Wir konzentrieren uns auf Gliederg\u00fcrtel-Muskeldystrophie Typ 2L (LGMD2L)<\/p>\n<p><strong>WENN SIE SICH AUF EINEN UNTERTYP KONZENTRIEREN, GIBT ES DANN EIN REGISTER UND WIE K\u00d6NNEN SICH PATIENTEN ANSCHLIESSEN? <\/strong><\/p>\n<p>Ja, das Patientenregister f\u00fcr LGMD2L ist \u00fcber unsere Website zug\u00e4nglich unter <a href=\"http:\/\/www.lgmd2l-foundation.org\/patient-registration\">www.lgmd2l-foundation.org\/patient-registration<\/a><\/p>\n<p><strong>Ist Ihre Organisation eine Non-Profit-Organisation? Wenn ja, welche Art:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><\/p>\n<p>Ja, eine in den USA ans\u00e4ssige, steuerbefreite \u00f6ffentliche Wohlt\u00e4tigkeitsorganisation (501 (c)(3)).<\/p>\n<p><strong>WAS HAT SIE BEI DER GR\u00dcNDUNG IHRER ORGANISATION INSPIRIERT?<\/strong>:<\/p>\n<p>In erster Linie geht es darum, ein Patientenregister f\u00fcr Personen mit der Diagnose LGMD2L zu erstellen, um f\u00fcr klinische Studien vorbereitet zu sein, sobald diese verf\u00fcgbar sind.<\/p>\n<p><strong>WAS IST DER AUFTRAG IHRER ORGANISATION?\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><\/p>\n<p>Das Ziel der LGMD2L Foundation ist es, Menschen, die von dieser seltenen Krankheit betroffen sind, zu vereinen. Au\u00dferdem soll sie ein offenes Forum bieten, um Kontakte zu kn\u00fcpfen, zu diskutieren und schlie\u00dflich eine Gemeinschaft von LGMD2L-Mitgliedern aufzubauen. Obwohl unsere Krankheit selten ist und kaum verstanden wird, haben wir diese Stiftung gegr\u00fcndet, um eine Datenbank von LGMD2L-Patienten f\u00fcr k\u00fcnftige wissenschaftliche Forschung und klinische Studien aufzubauen. Der einzige Weg, etwas zu ver\u00e4ndern, besteht darin, diejenigen zu vereinen, die sich f\u00fcr eine Heilung einsetzen!<\/p>\n<p><strong>WELCHE DIENSTLEISTUNGEN BIETET IHRE ORGANISATION AN?\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><\/p>\n<p>Register, Informationen \u00fcber die Website und soziale Medien. Unterst\u00fctzung nach Bedarf und Verbindungen zu anderen Ressourcen der Gemeinschaft.<\/p>\n<p><strong>WORAUF IST IHRE ORGANISATION AM MEISTEN STOLZ:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><\/p>\n<p>Erlangung des Status der Gemeinn\u00fctzigkeit und Einrichtung der Website mit der Registratur.<\/p>\n<p><strong>Was m\u00f6chten Sie, dass die Welt \u00fcber IHRE ORGANISATION erf\u00e4hrt?<\/strong>:<\/p>\n<p>Wir sind dabei, gro\u00dfartige Verbindungen in diesem Bereich aufzubauen, und wir hoffen, ein Register zu erstellen, das uns helfen wird, wenn klinische Versuche anstehen.<\/p>\n<p><strong>WIE K\u00d6NNEN SICH MENSCHEN AN DER UNTERST\u00dcTZUNG IHRER ORGANISATION BETEILIGEN?\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>Auf unserer Website finden Sie Informationen, um mit uns in Kontakt zu treten und eventuell steuerlich absetzbare Spenden zu t\u00e4tigen, die wir ben\u00f6tigen, um bei Veranstaltungen und Konferenzen mit den Informationen in Verbindung zu bleiben.<\/p>\n<p><strong>WIE SIE IHRE ORGANISATION AM BESTEN KONTAKTIEREN K\u00d6NNEN:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><\/p>\n<p>Auf unserer Website finden Sie unsere E-Mail-Adresse und Telefonnummer. Sie k\u00f6nnen uns jederzeit erreichen. Sie k\u00f6nnen uns auch jederzeit eine Nachricht \u00fcber Facebook oder Twitter schicken.<\/p>\n<p><strong>GIBT ES SONST NOCH ETWAS, DAS SIE HINZUF\u00dcGEN M\u00d6CHTEN?\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><\/p>\n<p>Wir freuen uns auf den Erfolg bei der Heilung und Behandlung von LGMD2L.<\/p>\n<p>\u00a0<\/p>\n<p>* * * Um weitere \"LGMD Spotlight Interviews\" zu lesen oder um sich f\u00fcr ein Interview zur Verf\u00fcgung zu stellen, besuchen Sie bitte unsere Website unter\u00a0 <a href=\"https:\/\/www.lgmd-info.org\/de\/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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