{"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\/de\/lgmd2i\/2018\/10\/29\/organization-lgmd2i-research-fund\/","title":{"rendered":"ORGANISATION: LGMD2i-Forschungsfonds"},"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\/10\/LGMD2i-Research-Fund.png\" alt=\"\" class=\"lazyload wp-image-2316\"\/><\/figure>\n\n\n<p><strong>NAME DER ORGANISATION<\/strong>:         LGMD2i-Forschungsfonds<\/p>\n<p><strong>WEBSITE:<\/strong>\u00a0 \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <u><a href=\"http:\/\/www.lgmd2ifund.org\/\" target=\"_blank\" rel=\"noopener noreferrer\">http:\/\/www.lgmd2ifund.org\/<\/a><\/u><\/p>\n<p><strong>FACEBOOK:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong> <a href=\"https:\/\/www.facebook.com\/jeanpierre.laurent.58173\" target=\"_blank\" rel=\"noopener noreferrer\">https:\/\/www.facebook.com\/jeanpierre.laurent.58173<\/a><\/p>\n<p><strong>AUF WELCHEN UNTERTYP VON LGMD KONZENTRIERT SICH IHRE ORGANISATION:\u00a0 <\/strong><\/p>\n<p>Wir konzentrieren uns ausschlie\u00dflich auf LGMD2I<\/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>Uns ist ein Register bekannt: das Global FKRP Registry (https:\/\/www.fkrp-registry.org\/). Es hat seinen Sitz zwar im Vereinigten K\u00f6nigreich, ist aber ein internationales Register, das an die Besonderheiten seltener Krankheiten angepasst ist. LGMD2I ist eine sehr seltene Krankheit, was bedeutet, dass die Zahl der Betroffenen aus Sicht der Arzneimittelentwickler gering ist. Da f\u00fcr fortgeschrittene klinische Studien viele Teilnehmer erforderlich sind, wird ein globales Register dazu beitragen, eine gro\u00dfe Zahl potenzieller Teilnehmer zu ermitteln und die Chance auf eine erfolgreiche Teilnahme an dringend ben\u00f6tigten Studien zu erh\u00f6hen. Wir haben dieses Register viele Jahre lang finanziell unterst\u00fctzt, und es entwickelt sich zu einem gro\u00dfen Gewinn f\u00fcr die LGMD2I-Gemeinschaft.<\/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, wir sind eine private Stiftung ohne Erwerbszweck.<\/p>\n<p><strong>WAS HAT SIE BEI DER GR\u00dcNDUNG IHRER ORGANISATION INSPIRIERT?<\/strong>:<\/p>\n<p>Menschen mit LGMD2I haben bei der Festlegung unseres Schwerpunkts und Auftrags eine wichtige Rolle gespielt.<\/p>\n<p><strong>WAS IST DIE MISSION IHRER ORGANISATION:<\/strong><\/p>\n<p>Wir wollen ein Heilmittel finden und Menschen mit 2I helfen, ihre Lebensqualit\u00e4t zu erhalten.<\/p>\n<p><strong>WELCHE DIENSTLEISTUNGEN BIETET IHRE ORGANISATION AN?<\/strong><\/p>\n<p>Wir bieten keine Dienstleistungen an. Wir finanzieren die Forschung und helfen dabei, Menschen mit Informationen \u00fcber die Krankheit und die medizinische Versorgung zu versorgen.<\/p>\n<p><strong>WORAUF IST IHRE ORGANISATION AM MEISTEN STOLZ:<\/strong><\/p>\n<p>Wir haben die Initiierung von Programmen in allen wichtigen Therapiebereichen (Gentherapie, Stammzellen, ...), Diagnostik und Forschungsinstrumenten (Mausmodell, Register, ...) finanziert. Dank unseres Engagements ist die Zahl der Forscher im Bereich LGMD2I in allen Regionen der Welt stetig gewachsen. Es war wichtig, eine gewisse kritische Masse an Forschungsgruppen zu schaffen; jetzt ist es wichtig, sie aufrechtzuerhalten...<\/p>\n<p><strong>Was m\u00f6chten Sie, dass die Welt \u00fcber IHRE ORGANISATION erf\u00e4hrt?<\/strong>:<\/p>\n<p>Wir finanzieren alle LGMD2I-Forschungsprojekte, die uns einer Heilung n\u00e4her bringen k\u00f6nnen, und wir unterst\u00fctzen eine umfassende Diagnose. Wir glauben, dass die geeignete Behandlung\/Heilung f\u00fcr 2I eine Kombination von Ma\u00dfnahmen sein wird, die das fehlerhafte Gen reparieren und die Muskelsch\u00e4den r\u00fcckg\u00e4ngig machen. Jedes Labor, das \u00fcber Forschungs-Know-how und Technologien verf\u00fcgt, die f\u00fcr die Entwicklung einer Behandlung f\u00fcr LGMD2I eingesetzt werden k\u00f6nnen, sollte sich mit uns in Verbindung setzen.<\/p>\n<p><strong>WIE K\u00d6NNEN SICH MENSCHEN AN DER UNTERST\u00dcTZUNG IHRER ORGANISATION BETEILIGEN?<\/strong><\/p>\n<p>Jeder, der Informationen \u00fcber die Krankheit hat oder an der Suche nach einem Heilmittel interessiert ist, kann sich gerne mit uns in Verbindung setzen.<\/p>\n<p><strong>WIE SIE IHRE ORGANISATION AM BESTEN KONTAKTIEREN K\u00d6NNEN:<\/strong><\/p>\n<p>F\u00fcr weitere Informationen wenden Sie sich bitte an:  Dr. Jean-Pierre Laurent, Programmbeauftragter per E-Mail: <a href=\"mailto:jpl@lgmd2ifund.org\" target=\"_blank\" rel=\"noopener noreferrer\">jpl@lgmd2ifund.org<\/a><\/p>\n<p><strong>\u00a0<\/strong><\/p>","protected":false},"excerpt":{"rendered":"<p>NAME OF ORGANIZATION:\u00a0 \u00a0\u00a0\u00a0\u00a0\u00a0 \u00a0LGMD2i Research Fund WEBSITE:\u00a0 \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 http:\/\/www.lgmd2ifund.org\/ [&hellip;]<\/p>","protected":false},"author":1,"featured_media":2316,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[94,35,95],"tags":[],"class_list":["post-2317","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-organization-interview","category-lgmd2i","category-organization"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - 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