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Date Posted: 19:40:50 10/06/17 Fri
Author: frada lai
Author Host/IP: n11211984239.netvigator.com / 112.119.84.239
Subject: 罕見疾病

罕見疾病
罕見疾病教育講座
https://www.youtube.com/user/Rarediseasecg
International Federation of Marfan Syndrome Organizations （ IFMSO ）
國際馬凡氏綜合症組織聯會
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 。網站列出會員組織之網站及聯絡方法，並有以往會議資料庫及最新會議安排情況。網站亦有馬凡氏綜合症研究經費及邀請提交建議書消息。

The National Marfan Foundation
全國馬凡氏基金 ( 美國 )
http://www.marfan.org/
由馬凡氏綜合症病人及家人成立於 1981 的自助性組織。旨在向病人、家屬及醫護界準確發放最新馬凡氏綜合症訊息，指供溝通平台以分享經驗及互相支持，並支持及推動有關此病之研究。網站有大量有關馬凡氏綜合症之介紹、病人須知及最新研究結果等。

The Canadian Marfan Association
加拿大馬凡氏組織
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。此組織亦支持及推動有關馬凡氏綜合症之研究。

Marfan Association UK
英聯邦馬凡氏組織
http://www.marfan.org.uk

Stanford University Center for Marfan Syndrome and Related Connective Tissue Disorders
史丹佛大學馬凡氏綜合症及相關連繫組織失調症研究中心
http://marfan.stanford.edu/

台灣馬凡之家
http://www.marfan.org.tw/

日本сюиャ⑦協会
http://www.marfan.jp/
SADS美國基金會
http://www.sads.org
SADS英國基金會
http://www.sadsuk.org
香港醫管局
http://www.ha.org.hk
香港心臟專科學院
http://www.hkcchk.com
救心機資訊及技術參考網
http://www.aed.com.hk
關心您的心
http://www.careheart.org.hk
World Heart Federation
http://www.world-heart-federation.org
BrugadaDrugs.org
http://www.brugadadrugs.org

本港孤兒症患者及家屬支援團體：
http://www.jhforphandisease.org/zh/orphan_diseases/resources
有關神經 - 肌肉疾病資料及組織
http://www.hknmda.org.hk/index.php?option=com_content&view=category&layout=blog&id=8&Itemid=7
http://www.hknmda.org.hk/index.php

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