{"id":5397,"date":"2021-07-27T00:20:35","date_gmt":"2021-07-27T00:20:35","guid":{"rendered":"https:\/\/www.lgmd-info.org\/?p=5397"},"modified":"2024-02-09T14:24:03","modified_gmt":"2024-02-09T14:24:03","slug":"lgmd-organization-uildm","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/de\/organization-interview\/2021\/07\/27\/lgmd-organization-uildm\/","title":{"rendered":"LGMD ORGANISATION: UILDM LGMD Gruppe"},"content":{"rendered":"

\"Uildm\"<\/p>\n

ORGANISATION<\/strong>: UILDM LGMD Gruppe<\/p>\n

WEBSITE:<\/strong> https:\/\/www.uildm.org\/<\/a><\/p>\n

FACEBOOK: <\/strong>https:\/\/www.facebook.com\/uildm.naz<\/a><\/p>\n

TWITTER: <\/strong>https:\/\/twitter.com\/UILDMnazionale<\/a><\/p>\n

AUF WELCHEN UNTERTYP VON LGMD KONZENTRIERT SICH IHRE ORGANISATION: <\/strong><\/p>\n

Die UILDM LGMD-Gruppe konzentriert sich nicht auf einen bestimmten LGMD-Untertyp. Sie bezieht sich auf alle LGMD-Typen.<\/p>\n

WAS HAT SIE BEI DER GR\u00dcNDUNG IHRER ORGANISATION INSPIRIERT?<\/strong>:<\/p>\n

Wir haben uns von dem Bed\u00fcrfnis der Menschen, die mit einer Gliederg\u00fcrtelmuskeldystrophie leben, inspirieren lassen, Teil einer repr\u00e4sentativen Gruppe zu sein, die ihnen eine Stimme geben k\u00f6nnte, da es f\u00fcr sie schwierig ist, Antworten auf ihre Bed\u00fcrfnisse zu finden und sie sehr oft von den Institutionen vergessen werden.<\/p>\n

WAS IST DER AUFTRAG IHRER ORGANISATION?<\/strong><\/p>\n

Die Aktivit\u00e4ten der UILDM LGMD-Gruppe konzentrieren sich auf: - F\u00f6rderung der Entwicklung einer LGMD-Gemeinschaft; - Bereitstellung wissenschaftlicher und medizinischer Informationen \u00fcber LGMD; - F\u00f6rderung des Erfahrungs- und Beratungsaustauschs zwischen Menschen, die an der gleichen Krankheit leiden.<\/p>\n

WELCHE DIENSTLEISTUNGEN BIETET IHRE ORGANISATION AN?<\/strong><\/p>\n

Wir haben zwei WhatsApp-Gruppen eingerichtet: eine f\u00fcr Nachrichten und Updates aus der LGMD-Welt, die andere ist eine offene Selbsthilfegruppe, in der die Mitglieder Ideen, Erfahrungen und Ratschl\u00e4ge austauschen k\u00f6nnen. Wir organisieren regelm\u00e4\u00dfige Online-Treffen, um einen Austausch unter Gleichgesinnten zu erm\u00f6glichen und Informationen \u00fcber die Aktivit\u00e4ten der Gruppe zu teilen. In Absprache mit unserem wissenschaftlichen Ausschuss organisieren wir auch Online-Webinare mit Fachleuten aus der wissenschaftlichen und medizinischen Welt.<\/p>\n

WORAUF IST IHRE ORGANISATION AM MEISTEN STOLZ:<\/strong><\/p>\n

Die Gruppe ist sehr motiviert und wird immer gr\u00f6\u00dfer. Die Mitglieder sind bereit, sich gegenseitig zu helfen, und sie finden oft gemeinsam L\u00f6sungen f\u00fcr gemeinsame Probleme.<\/p>\n

WAS M\u00d6CHTEN SIE, DASS DIE WELT \u00dcBER IHRE ORGANISATION ERF\u00c4HRT?<\/strong>:<\/p>\n

Wir m\u00f6chten, dass die Menschen wissen, dass die UILDM LGMD Gruppe existiert und f\u00fcr die gesamte LGMD Gemeinschaft zur Verf\u00fcgung steht. Je mehr unsere Gruppe w\u00e4chst, desto mehr k\u00f6nnen wir unseren Anliegen Nachdruck verleihen.<\/p>\n

WIE K\u00d6NNEN SICH MENSCHEN AN DER UNTERST\u00dcTZUNG IHRER ORGANISATION BETEILIGEN?<\/strong><\/p>\n

Sie k\u00f6nnen sich an die E-Mail-Adresse gruppocingoli@uildm.it wenden und darum bitten, unserer WhatsApp-Gruppe beizutreten. Sie k\u00f6nnen sich auch auf der UILDM-Website und der Facebook-Seite \u00fcber unsere Aktivit\u00e4ten informieren.<\/p>\n

WIE SIE IHRE ORGANISATION AM BESTEN KONTAKTIEREN K\u00d6NNEN:<\/strong><\/p>\n

Sie k\u00f6nnen uns per E-Mail unter folgender Adresse erreichen gruppocingoli@uildm.it<\/a><\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":3,"featured_media":5421,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[94,95],"tags":[],"class_list":["post-5397","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-organization-interview","category-organization"],"acf":[],"yoast_head":"\nLGMD ORGANIZATION: UILDM LGMD Group - 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\/de\/organization-interview\/2021\/07\/27\/lgmd-organization-uildm\/\" \/>\n<meta property=\"og:locale\" content=\"de_DE\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"LGMD ORGANIZATION: UILDM LGMD Group - 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