{"id":21388,"date":"2020-10-07T17:16:39","date_gmt":"2020-10-07T15:16:39","guid":{"rendered":"https:\/\/alan.wearequattro.com\/resources\/"},"modified":"2024-11-04T08:42:07","modified_gmt":"2024-11-04T07:42:07","slug":"ressourcen","status":"publish","type":"page","link":"https:\/\/alan.lu\/de\/ressourcen\/","title":{"rendered":"Ressourcen"},"content":{"rendered":"

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Spezifische Ressourcen<\/h2>\n

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RATGEBER SELTENE ERKRANKUNGEN<\/h3>\n

[\/vc_column_text][vc_empty_space height=”35px”][vc_column_text]Der \u201eGuide d’orientation luxembourgeois pour les personnes vivant avec une maladie rare\u201c informiert \u00fcber die Dienste und Hilfen, die in den verschiedenen Bereichen (z. B. Gesundheitsf\u00fcrsorge, Sozialversicherung, finanzielle Unterst\u00fctzung, Schule usw.) verf\u00fcgbar sind, und f\u00fchrt die betroffenen Menschen durch die spezifischen Verfahren und Vorg\u00e4nge.<\/p>\n

Ratgeber lesen<\/a>[\/vc_column_text][vc_empty_space height=”50px”][\/vc_column][\/vc_row][vc_row content_width=”grid”][vc_column width=”1\/3″][vc_column_text]<\/p>\n

AFM-TELETHON<\/h3>\n

[\/vc_column_text][vc_empty_space height=”35px”][vc_column_text]www.afm-telethon.com<\/a><\/p>\n

Die franz\u00f6sische Vereinigung f\u00fcr Muskeldystrophie (AFM-T\u00e9l\u00e9thon) setzt sich aus Patienten und deren Familien zusammen, die von genetischen, seltenen und schwerwiegenden, fortschreitenden Erkrankungen betroffen sind.[\/vc_column_text][vc_empty_space height=”50px”][\/vc_column][vc_column width=”1\/3″][vc_column_text]<\/p>\n

EUPATI<\/h3>\n

[\/vc_column_text][vc_empty_space height=”35px”][vc_column_text]www.eupati.eu<\/a><\/p>\n

Die European Patients\u2019 Academy on Therapeutic Innovation (EUPATI) ist eine \u00f6ffentlich-private Partnerschaft mit mehreren Interessengruppen. EUPATI bietet Aus- und Weiterbildungen an, damit Patienten und Patientenvertreter die Forschung und Entwicklung von Arzneimitteln besser verstehen und einen sinnvollen Beitrag hierzu leisten k\u00f6nnen. Au\u00dferdem sollen hierdurch die Verf\u00fcgbarkeit medizinischer Informationen f\u00fcr Patienten und andere Interessengruppen verbessert werden.[\/vc_column_text][vc_empty_space height=”50px”][\/vc_column][vc_column width=”1\/3″][vc_column_text]<\/p>\n

EURORDIS<\/h3>\n

[\/vc_column_text][vc_empty_space height=”35px”][vc_column_text]www.eurordis.org<\/a><\/p>\n

EURORDIS ist eine nicht-staatliche patienten-gesteuerte Allianz von Patientenorganisationen und vertritt 932 Patientenorganisationen aus 73 L\u00e4ndern. EURORDIS versucht, die Lebensqualit\u00e4t von Menschen mit seltenen Erkrankungen in Europa zu verbessern, durch Interessenvertretung auf europ\u00e4ischer, politischer Ebene, Unterst\u00fctzung der Forschung und Arzneimittelentwicklung, Erleichterung der Vernetzung zwischen Patientengruppen und Sensibilisierung.[\/vc_column_text][vc_empty_space height=”50px”][\/vc_column][\/vc_row][vc_row content_width=”grid”][vc_column width=”1\/3″][vc_column_text]<\/p>\n

MYOBASE<\/h3>\n

[\/vc_column_text][vc_empty_space height=”35px”][vc_column_text]www.myobase.org<\/a><\/p>\n

Myobase ist eine bibliografische Datenbank f\u00fcr neuromuskul\u00e4re Erkrankungen, die von AFM-T\u00e9l\u00e9thon erstellt wurde.[\/vc_column_text][vc_empty_space height=”50px”][\/vc_column][vc_column width=”1\/3″][vc_column_text]<\/p>\n

ORPHANET<\/h3>\n

[\/vc_column_text][vc_empty_space height=”35px”][vc_column_text]www.orpha.net<\/a><\/p>\n

Das europ\u00e4ische Portal f\u00fcr seltene Krankheiten und Orphan Drugs. Orphanet ist eine einzigartige Ressource, die das Ziel verfolgt, das Wissen um seltene Krankheiten zu sammeln und zu erweitern, um so die Diagnose, Versorgung und Behandlung von Patienten mit seltenen Krankheiten zu verbessern. Orphanet ist ein Verzeichnis aller seltenen Erkrankungen und umfasst gleichzeitigt auch Verzeichnisse der Expertenzentren, der klinischen Studien, der Register, der Arzneimittel und vieles mehr. [\/vc_column_text][vc_empty_space height=”50px”][\/vc_column][vc_column width=”1\/3″][vc_column_text css=””]<\/p>\n

JARDIN<\/h3>\n

[\/vc_column_text][vc_empty_space height=”35px”][vc_column_text css=””]www.jardin-ern.eu\/<\/a><\/p>\n

JARDIN ist eine europ\u00e4ische \u201eJoint Action\u201c mit dem Ziel, den Zugang zu den Europ\u00e4ischen Referenznetzwerken (ERNs) durch deren Integration in die nationalen Gesundheitssysteme zu verbessern.[\/vc_column_text][vc_empty_space height=”50px”][\/vc_column][\/vc_row][vc_row][vc_column][vc_empty_space height=”50px”][vc_column_text]<\/p>\n

Allgemeine Ressourcen<\/h2>\n

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INFO-HANDICAP LUXEMBOURG<\/h3>\n

[\/vc_column_text][vc_empty_space height=”35px”][vc_column_text]info-handicap.lu<\/a><\/p>\n

Seit 1993 steht die Nationale Informations- und Begegnungsstelle im Bereich Behinderung den Betroffenen, ihren Familien, Institutionen und jedem, der sich \u00fcber das Thema Behinderung informieren m\u00f6chte, zur Verf\u00fcgung.[\/vc_column_text][vc_empty_space height=”50px”][\/vc_column][vc_column width=”1\/3″][vc_column_text]<\/p>\n

SANTE.LU<\/h3>\n

[\/vc_column_text][vc_empty_space height=”35px”][vc_column_text]www.sante.public.lu<\/a><\/p>\n

Die offizielle Webseite des Luxemburger Gesundheitsministeriums[\/vc_column_text][vc_empty_space height=”50px”][\/vc_column][vc_column width=”1\/3″][vc_column_text]<\/p>\n

TELETHON LUXEMBOURG<\/h3>\n

[\/vc_column_text][vc_empty_space height=”35px”][vc_column_text]www.telethon.lu<\/a><\/p>\n

Die luxemburgische Version des T\u00e9l\u00e9thon sammelt Spenden f\u00fcr die Forschung an seltenen Erkrankungen und f\u00fcr die psychosoziale Unterst\u00fctzung von Menschen mit einer seltenen Erkrankung. T\u00e9l\u00e9thon Luxembourg wird von der Fondation Lions District 113 Luxembourg organisiert.[\/vc_column_text][vc_empty_space height=”50px”][\/vc_column][\/vc_row][vc_row][vc_column][vc_empty_space height=”50px”][\/vc_column][\/vc_row][vc_row content_width=”grid” css=”.vc_custom_1596118384380{padding-top: 36px !important;padding-bottom: 41px !important;background-color: #ee3f75 !important;}”][vc_column css=”.vc_custom_1492609383973{padding-top: 2px !important;}”]\t

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Melden Sie sich bei uns, wenn Sie Fragen haben oder Unterst\u00fctzung brauchen<\/span><\/h2>\n\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\n\t\t\t\t\t\t\t\t\t
\n\t\t\t\t\t\t\tKontakt<\/span> <\/a>\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t<\/div>\n[\/vc_column][\/vc_row]<\/p>\n<\/div>","protected":false},"excerpt":{"rendered":"

[vc_row][vc_column][vc_column_text] Spezifische Ressourcen [\/vc_column_text][vc_empty_space height=”50px”][\/vc_column][\/vc_row][vc_row content_width=”grid”][vc_column][vc_column_text] RATGEBER SELTENE ERKRANKUNGEN [\/vc_column_text][vc_empty_space height=”35px”][vc_column_text]Der \u201eGuide d’orientation luxembourgeois pour les personnes vivant avec une maladie rare\u201c informiert \u00fcber die Dienste und Hilfen, die in…<\/p>\n","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"give_campaign_id":0,"inline_featured_image":false,"footnotes":""},"class_list":["post-21388","page","type-page","status-publish","hentry"],"yoast_head":"\nRessourcen: more than a plan, a collaboration - ALAN<\/title>\n<meta name=\"description\" content=\"The National Plan for Rare Diseases is critical to guarantee equal access to diagnostics, therapy, care and research for all rare disease patients.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/alan.lu\/de\/ressourcen\/\" \/>\n<meta property=\"og:locale\" content=\"de_DE\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Ressourcen: more than a plan, a collaboration - 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