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資源

聯絡我們 編輯

資源材料

列出這些在線資源是為了提供醫療保健公司、非營利組織和其他宣導團體提供的可能有用的建議和服務。

這些服務大多提供給居住在美國的人。如果您知道應為美國或其他國家/地區列出的其他資源，請聯繫 ECD 全球聯盟。

最新的 ECD 護理和治療專家指南可在 組織細胞腫瘤 – 指南詳情 （nccn.org） 中找到，您需要點擊“NCCN 指南”。該網站需要創建一個免費帳戶才能訪問該文檔，但這是值得的。

此外， 成年組織細胞腫瘤患者的生存問題 為管理 ECD 患者可能遇到的一些併發症和挑戰提供了指導。

我們社區的 ECD 醫學專家幫助編寫了兩種類型的小冊子，用於通識教育和宣傳目的。患者手冊可幫助社區的新成員瞭解ECD的基礎知識。該醫療手冊可與您的護理團隊或任何醫療專業人員共用。

索取宣傳冊

藥物援助

為您的處方需求尋找解決方案可能具有挑戰性。以下清單包括可能有助於以經濟實惠的價格獲得藥物的藥物計劃。請在我們的網頁上查找付款人説明 提交付款人上訴。

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保險和經濟援助

可以通過以下來源獲得財務和醫療保健支援。

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旅行協助

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合作夥伴協會

以下宣導團體服務於組織細胞增多症或一般罕見疾病，可能會對您的 ECD 之旅有所説明。

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一般資源

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憂鬱和焦慮幫助

如果您覺得自己可能會傷害自己或他人，請致電、發短信或與 988 聊天，聯繫全國自殺和危機預防熱線的危機顧問。24/7 幫助。 988生命線

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APV-D 資源

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