{"id":2111,"date":"2018-07-26T10:25:01","date_gmt":"2018-07-26T15:25:01","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=2111"},"modified":"2018-07-26T10:25:01","modified_gmt":"2018-07-26T15:25:01","slug":"organization-jain-foundation","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/lgmd2b\/2018\/07\/26\/organization-jain-foundation\/","title":{"rendered":"ORGANIZACJA: Fundacja Jain\u00a0"},"content":{"rendered":"
\"\"<\/figure>\n\n\n

NAZWA ORGANIZACJI<\/strong>: Fundacja Jain\u00a0\u00a0\u00a0<\/p>\n

STRONA INTERNETOWA:<\/strong>\u00a0 \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 www.jain-foundation.org<\/a><\/p>\n

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

TWITTER:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong> https:\/\/twitter.com\/JainFoundation<\/a><\/p>\n

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

Dysferlinopatia (LGMD2B\/Miyoshi Myopathy Type 1), kt\u00f3re s\u0105 spowodowane mutacjami w genie dysferliny.<\/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

Tak, prowadzimy rejestr pacjent\u00f3w z dysferlinopati\u0105. Zach\u0119camy pacjent\u00f3w do kontaktu z nami pod adresem patients@jain-foundation.org; wi\u0119cej szczeg\u00f3\u0142\u00f3w na temat rejestru mo\u017cna znale\u017a\u0107 pod adresem https:\/\/www.jain-foundation.org\/patient-physician-resources\/patient-registration<\/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

Jeste\u015bmy zarejestrowani jako prywatna fundacja non-profit w Stanach Zjednoczonych, w zwi\u0105zku z czym nie zabiegamy o darowizny od spo\u0142ecze\u0144stwa.<\/p>\n

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

Rozpocz\u0119li\u015bmy dzia\u0142alno\u015b\u0107 w wyniku zdiagnozowania u syna naszego za\u0142o\u017cyciela dysferlinopatii. Po nawi\u0105zaniu przez rodzin\u0119 kontaktu z innymi pacjentami i badaczami, Fundacja Jain zosta\u0142a za\u0142o\u017cona w 2005 roku.<\/p>\n

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

Opracowanie metod leczenia dysferlinopatii.<\/p>\n

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

Koncentrujemy si\u0119 przede wszystkim na badaniach i rozwoju terapii, a nie na us\u0142ugach dla pacjent\u00f3w. Nie jest jednak mo\u017cliwe testowanie terapii lub okre\u015blanie wynik\u00f3w bada\u0144 klinicznych bez pacjent\u00f3w, a diagnoza pozostaje du\u017cym wyzwaniem dla wszystkich postaci LGMD. Z tego powodu prowadzimy rejestr pacjent\u00f3w i \u015bwiadczymy us\u0142ugi diagnostyczne dla pacjent\u00f3w, kt\u00f3rzy mog\u0105 mie\u0107 dysferlinopati\u0119, aby pom\u00f3c w wyja\u015bnieniu ich diagnozy i umo\u017cliwi\u0107 im dost\u0119p do bada\u0144 klinicznych i ostatecznie leczenia.<\/p>\n

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

W\u0142a\u015bnie zako\u0144czyli\u015bmy wieloletnie badanie kliniczne, The Clinical Outcome Study of Dysferlinopathy, obejmuj\u0105ce oko\u0142o 200 pacjent\u00f3w w 15 o\u015brodkach klinicznych w o\u015bmiu krajach. Badanie to dostarczy\u0142o ostatecznej historii naturalnej dysferlinopatii, zidentyfikowa\u0142o najlepsze miary wynik\u00f3w (co b\u0119dzie mierzone, u ilu os\u00f3b, jak d\u0142ugo) do wykorzystania w badaniach klinicznych dysferlinopatii w celu ustalenia, czy leczenie jest skuteczne. Badanie to wkr\u00f3tce wejdzie w kolejn\u0105 faz\u0119, w kt\u00f3rej nasze odkrycia zostan\u0105 potwierdzone, kolejnych 100 pacjent\u00f3w b\u0119dzie mog\u0142o wzi\u0105\u0107 w nim udzia\u0142, a w badaniu wezm\u0105 udzia\u0142 cztery nowe o\u015brodki medyczne.<\/p>\n

Co chcesz, aby \u015bwiat dowiedzia\u0142 si\u0119 o TWOJEJ ORGANIZACJI?<\/strong>:<\/p>\n

Stosujemy wiele podej\u015b\u0107 do leczenia dysferlinopatii, w tym terapi\u0119 genow\u0105, zmian\u0119 przeznaczenia lek\u00f3w ju\u017c dost\u0119pnych na rynku dla innych chor\u00f3b oraz opracowywanie nowych lek\u00f3w. Je\u015bli chodzi o terapi\u0119 genow\u0105, obecnie \u015bci\u015ble wsp\u00f3\u0142pracujemy z firm\u0105 Myonexus, kt\u00f3ra opracowuje \"dwulekow\u0105\" terapi\u0119 genow\u0105 AAV dla dysferlinopatii. Ponadto, do tej pory przetestowali\u015bmy ponad 15 kandydat\u00f3w na leki w badaniach przedklinicznych na myszach z dysferlinopati\u0105 i zawsze badamy i testujemy nowe opcje leczenia. Mamy nadziej\u0119, \u017ce jedna lub wi\u0119cej z tych terapii przyniesie korzy\u015bci w przypadku dysferlinopatii.<\/p>\n

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

Poniewa\u017c nie zbieramy pieni\u0119dzy od spo\u0142ecze\u0144stwa, wsparcie, kt\u00f3rego szukamy od pacjent\u00f3w i innych os\u00f3b, polega na do\u0142\u0105czeniu do rejestru Dysferlin, rozwa\u017ceniu udzia\u0142u w badaniach klinicznych, zwi\u0119kszeniu \u015bwiadomo\u015bci na temat tej choroby i zaanga\u017cowaniu si\u0119 w spo\u0142eczno\u015b\u0107. Staje si\u0119 jasne, \u017ce w przypadku chor\u00f3b rzadkich istnienie silnej organizacji wspieraj\u0105cej i spo\u0142eczno\u015bci pacjent\u00f3w\/rodzin ma kluczowe znaczenie dla rozwoju terapii. Fundacja Jain mo\u017ce zapewni\u0107 organizacj\u0119, ale potrzebujemy Twojego wsparcia, aby zbudowa\u0107 siln\u0105 spo\u0142eczno\u015b\u0107!<\/p>\n

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

Pacjenci, u kt\u00f3rych zdiagnozowano lub podejrzewa si\u0119 dysferlinopati\u0119, mog\u0105 skontaktowa\u0107 si\u0119 z nami pod adresem patients@jain-foundation.org. Ponadto zach\u0119camy do odwiedzenia naszej strony internetowej, kt\u00f3ra zawiera wiele informacji na temat dysferlinopatii i naszych program\u00f3w badawczych.<\/p>\n

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

Koncentrujemy si\u0119 na prze\u0142amywaniu barier na drodze do naszego celu, jakim jest opracowanie terapii i lek\u00f3w. Obejmuje to wype\u0142nianie luk w wiedzy naukowej, kt\u00f3re mog\u0105 pom\u00f3c nam zidentyfikowa\u0107 mo\u017cliwe metody leczenia, uzyskanie lepszego klinicznego zrozumienia choroby, aby umo\u017cliwi\u0107 przeprowadzenie udanych bada\u0144 klinicznych, utrzymywanie zaanga\u017cowanej spo\u0142eczno\u015bci pacjent\u00f3w za pomoc\u0105 rejestru Dysferlin, aby badania mog\u0142y by\u0107 wype\u0142niane w efektywny spos\u00f3b oraz przeprowadzanie przedklinicznych i klinicznych test\u00f3w przysz\u0142ych terapii.<\/p>\n

\u00a0<\/p>","protected":false},"excerpt":{"rendered":"

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