{"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\/pl\/organization-interview\/2019\/12\/27\/organization-cure-vcp\/","title":{"rendered":"ORGANIZACJA: Cure VCP Disease, Inc."},"content":{"rendered":"
\n
\"\"<\/figure>\n<\/div>\n

NAZWA ORGANIZACJI<\/strong>: Cure VCP Disease, Inc.<\/p>\n

STRONA INTERNETOWA:<\/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

NA JAKIM PODTYPIE LGMD KONCENTRUJE SI\u0118 TWOJA ORGANIZACJA:\u00a0 <\/strong>\u00a0<\/p>\n

Choroby VCP, a w szczeg\u00f3lno\u015bci miopatia wtr\u0119towa zwi\u0105zana z chorob\u0105 Pageta ko\u015bci i ot\u0119pieniem czo\u0142owo-skroniowym (IBMPFD).\u00a0<\/p>\n

JE\u015aLI KONCENTRUJESZ SI\u0118 NA PODTYPIE, CZY ISTNIEJE REJESTR I W JAKI SPOS\u00d3B PACJENCI MOG\u0104 DO NIEGO DO\u0141\u0104CZY\u0106?<\/strong><\/p>\n

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

Czy Twoja organizacja jest organizacj\u0105 non-profit? Je\u015bli tak, to jakiego typu:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0<\/strong><\/p>\n

\u00a0 Tak, jeste\u015bmy publiczn\u0105 organizacj\u0105 non-profit 501(c)(3).<\/p>\n

CO ZAINSPIROWA\u0141O POWSTANIE TWOJEJ ORGANIZACJI?<\/strong>:<\/p>\n

\u00a0Nie istnia\u0142a \u017cadna formalna organizacja, kt\u00f3ra zajmowa\u0142aby si\u0119 organizacj\u0105 i u\u015bwiadamianiem pacjent\u00f3w i badaczy na temat chor\u00f3b VCP. Sam jestem pacjentem i straci\u0142em mam\u0119 z powodu tej choroby i czu\u0142em, \u017ce nie mog\u0119 bezczynnie czeka\u0107 i mie\u0107 nadziej\u0119, \u017ce co\u015b si\u0119 wydarzy w spo\u0142eczno\u015bci badawczej. Jako populacja pacjent\u00f3w musieli\u015bmy by\u0107 aktywnymi uczestnikami, aby osi\u0105gn\u0105\u0107 pozytywne wyniki, ale co najwa\u017cniejsze, aby zidentyfikowa\u0107 populacj\u0119 pacjent\u00f3w.\u00a0<\/p>\n

JAKA JEST MISJA ORGANIZACJI:<\/strong><\/p>\n

Cure VCP Disease, Inc. zosta\u0142a utworzona w celu wspierania wysi\u0142k\u00f3w na rzecz leczenia chor\u00f3b zwi\u0105zanych z mutacjami genu Valosin Containing Protein. Obejmuje to chorob\u0119 miopatii wtr\u0119towej zwi\u0105zanej z chorob\u0105 Pageta ko\u015bci i demencj\u0105 czo\u0142owo-skroniow\u0105 (IBMPFD). Naszym celem jest zapewnienie globalnej edukacji i \u015bwiadomo\u015bci na temat chor\u00f3b VCP lekarzom, badaczom, inwestorom, pacjentom, opiekunom i og\u00f3\u0142owi spo\u0142ecze\u0144stwa.<\/p>\n

JAKIE US\u0141UGI \u015aWIADCZY TWOJA ORGANIZACJA:<\/strong><\/p>\n

\u00a0Prowadzimy globalny rejestr pacjent\u00f3w z chorob\u0105 VCP. Zapewniamy nadziej\u0119 i edukacj\u0119 naszej populacji pacjent\u00f3w poprzez konferencje, biuletyny e-mailowe, zasoby online i seminaria internetowe.<\/p>\n

Z CZEGO TWOJA ORGANIZACJA JEST NAJBARDZIEJ DUMNA?<\/strong><\/p>\n

\u00a0Rozpocz\u0119li\u015bmy dzia\u0142alno\u015b\u0107 w styczniu 2018 r. i do kwietnia 2019 r. przeprowadzili\u015bmy inauguracyjn\u0105 konferencj\u0119 dla pacjent\u00f3w i opiekun\u00f3w z chorob\u0105 VCP. Wzi\u0119\u0142o w niej udzia\u0142 oko\u0142o 60 pacjent\u00f3w, opiekun\u00f3w i badaczy. Wszystkie nagrane sesje s\u0105 dost\u0119pne na naszym kanale YouTube Cure VCP Disease.<\/p>\n

CO CHCESZ, ABY \u015aWIAT DOWIEDZIA\u0141 SI\u0118 O TWOJEJ ORGANIZACJI?<\/strong>:<\/p>\n

\u00a0Wielu naszych pacjent\u00f3w jest b\u0142\u0119dnie diagnozowanych jako LGMD lub Inclusion Body Myositis. Droga do prawid\u0142owej diagnozy mo\u017ce by\u0107 stresuj\u0105ca dla wielu pacjent\u00f3w z chorobami nerwowo-mi\u0119\u015bniowymi. Naszym celem jest wsp\u00f3\u0142praca ze wszystkimi organizacjami zajmuj\u0105cymi si\u0119 chorobami nerwowo-mi\u0119\u015bniowymi u doros\u0142ych w celu zwi\u0119kszenia \u015bwiadomo\u015bci, edukacji i najlepszych praktyk. Wszyscy stoimy przed wieloma takimi samymi wyzwaniami zwi\u0105zanymi z naszymi chorobami i chocia\u017c nauka o naszych chorobach mo\u017ce by\u0107 inna, wszyscy musimy by\u0107 w tym razem.<\/p>\n

W JAKI SPOS\u00d3B LUDZIE MOG\u0104 ZAANGA\u017bOWA\u0106 SI\u0118 WE WSPIERANIE ORGANIZACJI:<\/strong><\/p>\n

\u00a0Staramy si\u0119 stworzy\u0107 program ambasadorski, aby dotrze\u0107 do pacjent\u00f3w, opiekun\u00f3w i spo\u0142eczno\u015bci naukowej. Nie znamy cz\u0119sto\u015bci wyst\u0119powania chor\u00f3b VCP, a identyfikacja wi\u0119kszej liczby pacjent\u00f3w ma kluczowe znaczenie dla zrozumienia ich globalnego wp\u0142ywu.<\/p>\n

JAKI JEST NAJLEPSZY SPOS\u00d3B KONTAKTU Z ORGANIZACJ\u0104:<\/strong><\/p>\n

Strona internetowa, grupa na Facebooku lub e-mail<\/p>\n

CZY JEST CO\u015a JESZCZE, CO CHCIA\u0141BY\u015a DODA\u0106?<\/strong><\/p>\n

\u00a0Kluczowym pytaniem do rozr\u00f3\u017cnienia mi\u0119dzy chorob\u0105 VCP a mutacj\u0105 LGMD jest pytanie dziedziczne: \"Czy inni cz\u0142onkowie rodziny wykazuj\u0105 os\u0142abienie mi\u0119\u015bni, choroby ko\u015bci i\/lub demencj\u0119?\". Choroba VCP jest dziedziczona autosomalnie dominuj\u0105co i w wi\u0119kszo\u015bci przypadk\u00f3w jest przekazywana rodzinnie i mo\u017ce objawia\u0107 si\u0119 r\u00f3\u017cnymi objawami. Moja matka, ciotka i dw\u00f3ch wujk\u00f3w (4 z 6 rodze\u0144stwa) mia\u0142o\/ma chorob\u0119 VCP. Poniewa\u017c jestem nosicielem mutacji, jest 50\/50, \u017ce moje potomstwo mo\u017ce by\u0107 ni\u0105 dotkni\u0119te. Gen VCP jest obecnie uwzgl\u0119dniony w wi\u0119kszo\u015bci paneli test\u00f3w genetycznych chor\u00f3b nerwowo-mi\u0119\u015bniowych.<\/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\/pl\/organization-interview\/2019\/12\/27\/organization-cure-vcp\/\" \/>\n<meta property=\"og:locale\" content=\"pl_PL\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"ORGANIZATION: Cure VCP Disease, Inc. - 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