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香港馬凡氏綜合症協會

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香港馬凡氏綜合症協會 | marfan.org.hk Reviews

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香港馬凡氏綜合症協會

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香港馬凡氏綜合症協會

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International Federation of Marfan Syndrome Organizations IFMSO. Http:/ www.marfanworld.org/. IFMSO 旨在為不同國家及地區之馬凡氏綜合症病人組織提供全球性的溝通平台,現有 22 個國家或地區之組織加入 IFMSO。 The National Marfan Foundation. 全國馬凡氏基金 ( 美國 ). Http:/ www.marfan.org/. The Canadian Marfan Association. Http:/ www.marfan.ca/. 由 Elizabeth McHenry 及其他病人與醫生於 1986 成立,除向向病人、家屬及醫護界準確發放最新馬凡氏綜合症訊息外,並致力加強公眾對此病之認識及警覺,鼓勵病人自組支持小組。 Http:/ www.marfan.org.uk. Stanford University Center for Marfan Syndrome and Related Connective Tissue Disorders.

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香港馬凡氏綜合症協會

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香港馬凡氏綜合症協會

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香港馬凡氏綜合症協會

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香港馬凡氏綜合症協會 Hong Kong Marfan Syndrome Association. 本會的名稱為 香港馬凡氏綜合症協會 Hong Kong Marfan Syndrome Association. 542 會費需於每年 12 月 31 日前繳交。 723 司庫 2 人. 724 秘書 2 人. 725 執行委員 3 人. 82 執行委員會成員提名表格須於會員大會舉行日前至少 8 個星期寄予所有永久會員及基本會. 83 每位提名人須得到最少兩名永久或基本會員的支持,並將提名表於會員大會前至少 4 個星期寄予本會。 87 經執行委員會所有成員同意下 ( 除被罷免者 ) ,執行委員會成員在特殊情况下能夠被執行. 913 會員大會開會通知須於會議前至少 30 日發出。 本會為非牟利組織, 其解散須召開專為此而召開的特別會員大會商議,法定人數不少於所有會員的 50%。

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友情連結 - 馬凡之家

http://www.marfan.org.tw/home/links

若您有想要推薦的連結,歡迎寄信至 service@marfan.org.tw. Http:/ www.tfrd.org.tw. Http:/ www.marfan.jp/. Http:/ www.facebook.com/groups/marfantw/. Http:/ www.genes-at-taiwan.com.tw/genehelp/. International Federation of Marfan Syndrome Organizations, 國際馬凡氏症聯合組織. Http:/ www.marfanworld.org/. Http:/ heartvalve001.blogspot.com/. NMFconnect - 美國 MARFAN 基金會論壇. Http:/ nmfconnect.marfan.org/. Http:/ www.marfan.org.hk/. Http:/ www.marfan.ca/. Http:/ www.marfan.org.

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香港馬凡氏綜合症協會

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馬凡之家

衛教] 維繫生命的薄膜 心臟瓣膜疾病 懶人包. 馬凡氏症病友聯誼會 2014 年會,特別邀請到台大醫院小兒心臟內科邱馨慧醫師,與病友與家屬們分享關於馬凡氏症以及常見的照顧問題,像是用藥、懷孕、手術 . 等。 最後更新日期 2018.3.13.

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