{"id":3342,"date":"2019-12-27T14:48:00","date_gmt":"2019-12-27T20:48:00","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=3342"},"modified":"2021-02-19T18:34:05","modified_gmt":"2021-02-19T18:34:05","slug":"organization-cure-vcp","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/de\/organization-interview\/2019\/12\/27\/organization-cure-vcp\/","title":{"rendered":"ORGANISATION: Cure VCP Disease, Inc."},"content":{"rendered":"
\n
\"\"<\/figure>\n<\/div>\n

NAME DER ORGANISATION<\/strong>: Cure VCP Disease, Inc.<\/p>\n

WEBSITE:<\/strong>\u00a0 \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 \u00a0https:\/\/www.curevcp.org<\/a><\/p>\n

FACEBOOK:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0<\/strong> https:\/\/www.facebook.com\/curevcpdisease\/<\/a><\/p>\n

TWITTER:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0<\/strong> @LostTexanInGA<\/p>\n

AUF WELCHEN UNTERTYP VON LGMD KONZENTRIERT SICH IHRE ORGANISATION:\u00a0 <\/strong>\u00a0<\/p>\n

VCP-Erkrankungen und insbesondere die Einschlussk\u00f6rper-Myopathie in Verbindung mit der Paget-Krankheit der Knochen und der Frontotemporalen Demenz (IBMPFD).\u00a0<\/p>\n

WENN SIE SICH AUF EINEN UNTERTYP KONZENTRIEREN, GIBT ES DANN EIN REGISTER UND WIE K\u00d6NNEN SICH PATIENTEN ANSCHLIESSEN?<\/strong><\/p>\n

https:\/\/www.curevcp.org\/patient-registry<\/a><\/p>\n

Ist Ihre Organisation eine Non-Profit-Organisation? Wenn ja, welche Art:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0<\/strong><\/p>\n

\u00a0 Ja, wir sind eine 501(c)(3) \u00f6ffentliche gemeinn\u00fctzige Organisation<\/p>\n

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

\u00a0Es gab keine formelle Organisation, die Patienten und Forscher \u00fcber VCP-Krankheiten aufkl\u00e4ren konnte. Ich bin selbst Patientin und hatte meine Mutter durch die Krankheit verloren. Ich konnte nicht tatenlos zusehen und darauf hoffen, dass sich in der Forschungsgemeinschaft etwas tut. Als Patientengruppe mussten wir uns aktiv beteiligen, um positive Ergebnisse zu erzielen, aber vor allem, um die Patientengruppe zu identifizieren.\u00a0<\/p>\n

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

Cure VCP Disease, Inc. wurde gegr\u00fcndet, um die Bem\u00fchungen zur Heilung von Krankheiten voranzutreiben, die mit Mutationen des Valosin Containing Protein-Gens zusammenh\u00e4ngen. Dazu geh\u00f6rt die Krankheit Inclusion Body Myopathy associated with Paget's disease of bone and Frontotemporal Dementia (IBMPFD). Unser Ziel ist es, \u00c4rzte, Forscher, Investoren, Patienten, Betreuer und die breite \u00d6ffentlichkeit weltweit \u00fcber VCP-Krankheiten aufzukl\u00e4ren und zu sensibilisieren.<\/p>\n

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

\u00a0Wir f\u00fchren ein weltweites Patientenregister f\u00fcr VCP-Patienten. Durch Konferenzen, E-Mail-Newsletter, Online-Ressourcen und Webinare geben wir unseren Patienten Hoffnung und Aufkl\u00e4rung.<\/p>\n

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

\u00a0Wir begannen im Januar 2018 und f\u00fchrten im April 2019 die erste Konferenz f\u00fcr Patienten und Betreuer von VCP-Krankheiten durch. Etwa 60 Patienten, Betreuer und Forscher haben daran teilgenommen. Alle aufgezeichneten Sitzungen sind auf unserem YouTube-Kanal \"Cure VCP Disease\" verf\u00fcgbar.<\/p>\n

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

\u00a0Viele unserer Patienten werden f\u00e4lschlicherweise als LGMD oder Inclusion Body Myositis diagnostiziert. Die Suche nach einer korrekten Diagnose kann f\u00fcr viele Patienten mit neuromuskul\u00e4ren Erkrankungen sehr belastend sein. Unser Ziel ist es, mit allen Organisationen, die sich mit neuromuskul\u00e4ren Erkrankungen bei Erwachsenen befassen, zusammenzuarbeiten, um das Bewusstsein f\u00fcr diese Erkrankungen zu sch\u00e4rfen, Aufkl\u00e4rung zu betreiben und bew\u00e4hrte Verfahren zu f\u00f6rdern. Wir alle stehen aufgrund unserer Krankheiten vor den gleichen Herausforderungen, und auch wenn die Wissenschaft unserer Krankheiten unterschiedlich sein mag, m\u00fcssen wir doch alle gemeinsam an einem Strang ziehen.<\/p>\n

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

\u00a0Wir versuchen, ein Botschafterprogramm ins Leben zu rufen, um Patienten, Betreuer und die wissenschaftliche Gemeinschaft zu erreichen. Wir kennen die Pr\u00e4valenz von VCP-Erkrankungen nicht und die Identifizierung von mehr Patienten ist entscheidend f\u00fcr das Verst\u00e4ndnis der globalen Auswirkungen.<\/p>\n

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

Website, Facebook-Gruppe oder E-Mail<\/p>\n

GIBT ES SONST NOCH ETWAS, DAS SIE HINZUF\u00dcGEN M\u00d6CHTEN?<\/strong><\/p>\n

\u00a0Die Schl\u00fcsselfrage zur Unterscheidung zwischen der VCP-Krankheit und einer m\u00f6glichen LGMD-Mutation ist die Frage nach der Vererbung: \"Weisen andere Familienmitglieder Muskelschw\u00e4che, Knochenerkrankungen und\/oder Demenz auf?\" Die VCP-Krankheit wird autosomal dominant vererbt und kann mit unterschiedlichen Symptomen auftreten. Meine Mutter, meine Tante und zwei Onkel (4 von 6 Geschwistern) hatten\/haben die VCP-Krankheit. Da ich Tr\u00e4ger der Mutation bin, ist es 50\/50, dass meine Nachkommen betroffen sein k\u00f6nnten. Das VCP-Gen ist jetzt in den meisten Gentests f\u00fcr neuromuskul\u00e4re Erkrankungen enthalten.<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":1,"featured_media":4384,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[94,95],"tags":[],"class_list":["post-3342","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-organization-interview","category-organization"],"acf":[],"yoast_head":"\nORGANIZATION: Cure VCP Disease, Inc. - 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\/2019\/12\/27\/organization-cure-vcp\/\" \/>\n<meta property=\"og:locale\" content=\"de_DE\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"ORGANIZATION: Cure VCP Disease, Inc. - 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