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癲癇患者及其關心的人們可以使用大量的在線資源。除網站外,這些組織中的許多組織還存在於Facebook,Twitter或其他社交媒體平台上。<br />這是癲癇病資源的樣本。<br />癲癇基金會<br />癲癇基金會總部位於馬里蘭州蘭德弗,提供教育,促進研究並倡導癲癇患者的權利。他們的網站上有關於以下方面的有用信息:<br /><br /><br />*癲癇病的類型和治療選擇<br />*癲癇綜合症<br /><br /><br />*患有癲癇病會怎樣<br />*癲癇患者的自我保健和急救<br />*當前的研究和其他新聞癲癇基金會在多個社交媒體平台上都有業務。他們的免費電話(800-332-1000)每週7天,每天24小時作為公共熱線運行。您也可以通過電子郵件聯繫他們以獲取更多信息,請聯繫ContactUs@efa.org。<br />美國癲癇病學會<br /><br /><br />美國癲癇病協會(AES)成立於1898年,其宗旨是增進對癲癇病的科學認識並改善癲癇患者的生活質量。<br />該小組每年舉行一次癲癇病專家會議(癲癇專科醫學專家)。它還籌集資金以資助研究,制定治療指南,努力提高對這種疾病的認識,並幫助指導公共政策。<br /> [https://firsturl.de/Z080UIY Homan] ,還為患者提供資源。<br />AES站點具有與多個其他癲癇組織的鏈接。 312-883-3800,info @ aesnet.org。<br />國際抗癲癇聯盟<br />ILAE成立於1909年,是一個國際組織,擁有100多個國家分會。它提供了指南並為癲癇的診斷和護理制定了國際標準。<br />癲癇研究聯合會(CURE)<br />CURE專注於籌集資金以資助導致癲癇病治療的研究。<br />這個位於芝加哥的小組還致力於提高對這種疾病的認識。它的網站提供了癲癇教育信息,正在進行的臨床試驗清單以及其贊助的籌款活動清單。 312-255-1801,info @ CUREepilepsy.org。<br />美國疾病預防控制中心:癲癇病<br /><br /><br />此頁麵包含有關癲癇,癲癇急救和緊急情況準備的多種資源。<br />關於癲癇的信息也可以用西班牙語獲得。<br />自我管理工具和程序資源可通過其管理癲癇病(MEW)程序獲得。<br />全國癲癇中心協會<br />超過230個綜合性癲癇中心的指南,具有搜索功能,可在您附近找到一個癲癇中心。<br />國立神經疾病和中風研究所(NINDS)癲癇病診所<br />NINDS的癲癇診所位於馬里蘭州的貝塞斯達,為癲癇病的住院和門診患者提供治療,重點是癲癇發作控制不佳的患者。提供聯繫信息給對治療或參與研究感興趣的癲癇患者。<br />SUDEP動作<br />這個總部位於英國的小組致力於提高人們對癲癇猝死(SUDEP)和其他與癲癇有關的死亡的認識。<br />MyEpilepsyTeam.com<br />一個專門針對癲癇患者的社交網站。<br />加勒比數據庫<br />CarpeDB是由國家科學基金會和塔斯卡盧薩州的阿拉巴馬大學共同發起的動態癲癇遺傳數據庫。 [https://bookmarkzones.trade/story.php?title=%EF%BB%BF%E6%98%AF%E6%99%82%E5%80%99%E5%81%9C%E6%AD%A2%E5%BE%9E%E7%89%9B%E7%9A%AE%E7%99%AC%E9%9A%B1%E7%9E%9E%E4%B8%A6%E9%96%8B%E5%A7%8B%E7%94%9F%E6%B4%BB%E4%BA%86-%E8%92%82%E5%A7%86%E7%9A%84%E6%95%85%E4%BA%8B#discuss https://bookmarkzones.trade/story.php?title=%EF%BB%BF%E6%98%AF%E6%99%82%E5%80%99%E5%81%9C%E6%AD%A2%E5%BE%9E%E7%89%9B%E7%9A%AE%E7%99%AC%E9%9A%B1%E7%9E%9E%E4%B8%A6%E9%96%8B%E5%A7%8B%E7%94%9F%E6%B4%BB%E4%BA%86-%E8%92%82%E5%A7%86%E7%9A%84%E6%95%85%E4%BA%8B#discuss] “癲癇基因”和相關出版物,為癲癇研究人員和公眾提供了一種新穎的資源。<br />他們的網站與其他多個國際組織都有鏈接。<br /><br /><br />
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Revision as of 16:06, 25 January 2021

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