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Date Posted: 02:01:38 07/25/17 Tue
Author: peter lai
Author Host/IP: pcd365116.netvigator.com / 203.218.155.116
Subject: 關心罕見病

關心罕見病

香港罕見疾病聯盟
http://www.hkard.org/

小而同罕有骨骼疾病基金會
http://www.lphk.org/

Little People of Hong Kong 少青風協會
http://www.hkpra.org/

Hong Kong Paediatric Rheumatism Association 香港小腦萎縮症協會


Hong Kong Spinocerebellar Ataxia Association 香港肌健協會
http://www.hknmda.org.hk/index.php

Hong Kong Neuro-muscular Disease Association 香港罕見疾病關注組
http://rarediseasecg.com/tc/aboutus.php

Hong Kong Rare Disease Concern Group 香港紅十字會甘迺迪中心校友會
https://www.facebook.com/jfkcaa

Hong Kong Red Cross John F. Kennedy Centre Alumni Association 香港病人組織聯盟


Hong Kong Alliance of Patients’ Organization 香港馬凡氏綜合症協會
http://www.marfan.org.hk/

Hong Kong Marfan Syndrome Association 香港斜視重影病患者協會
https://www.sites.google.com/site/hkasdvs/

Hong Kong Association of Squint and Double Vision Sufferers 香港粘多糖暨罕有遺傳病互助小組
http://www.hk-mps.com/

The Hong Kong Society for Rehabilitation 香港視網膜病變協會
http://www.retina.org.hk/

Retina Hong Kong 夏約書孤兒症基金會
http://www.jhforphandisease.org/zh/who_we_are/mission

Joshua Hellmann Foundation for Orphan Disease 香港卓護義工協會
http://www.hkccva.com/

Hong Kong Credible Care Volunteers Association Limited 遺傳性心律基金會
http://www.sadshk.org/zh/founder.php

財團法人罕見疾病基金會
http://www.tfrd.org.tw

中國罕見病
http://www.hanjianbing.org

罕見病百科
http://www.hanjianbing.org/database/index.html

友情鏈接
http://www.hanjianbing.org/help/friend.html

罕見病組織
http://www.hanjianbing.org/organize/index.html

小胖威利罕見病關愛中心
http://www.xpwilli.org/

上海市醫學會罕見病專科分會
http://www.shsma.org.cn/

山東省罕見疾病防治協會
http://www.sdams.cn/gjl/xh/sdjkkx.asp
北京醫學會罕見病分會

http://www.bjhjb.org.cn/

天津血友病聯誼會
http://www.yajy.org/

視網膜母細胞瘤互助聯盟
http://www.rbhope.org/

袖珍人之家
http://www.xiuzhenren.org/

PNH病友之家
http://www.pnhchina.org/

蝴蝶寶貝關愛中心
http://www.debra.org.cn/

中國結節性硬化症互助聯盟
http://www.tscchina.org/

LAM中國
http://www.lamchina.com.cn

DMD關愛協會
http://www.china-dmd.org/

愛力重症肌無力罕見病關愛中
http://www.mg-care.org/

月亮孩子之家
http://www.albinism.org.cn/

北京正宇粘多糖罕見病關愛中關愛協會
http://www.chinamps.cn

北京瓷娃娃罕見病關愛中心
http://chinadolls.org.cn/

衛生福利部國民健康署- 罕見疾病
https://www.hpa.gov.tw/Pages/List.aspx?nodeid=43

醫師對罕見疾病議題應有的認識
https://www.ntuh.gov.tw/neur/%E8%A1%9B%E6%95%99%E8%B3%87%E6%96%99/DocLib/%E9%86%AB%E5%B8%AB%E5%B0%8D%E7%BD%95%E8%A6%8B%E7%96%BE%E7%97%85%E8%AD%B0%E9%A1%8C%E6%87%89%E6%9C%89%E7%9A%84%E8%AA%8D%E8%AD%98.aspx


網路資源
連結

https://www.ntuh.gov.tw/neur/%E7%B6%B2%E7%AB%99%E9%80%A3%E7%B5%90/default.aspx

罕見病百科 - 上海市罕見病預防基金會
http://www.hjbjjh.org/Reception/Guidance.aspx?mid=7

http://www.hjbjjh.org/Reception/Index/Index.aspx

臺北市政府衛生局 罕見疾病專區
https://health.gov.taipei/Default.aspx?tabid=874

【杏林在線】 罕見病
https://www.youtube.com/watch?v=EovyEMGzHwA

社會能見度 遭遇罕見病
https://www.youtube.com/watch?v=TIgOhrYVcrY

魯豫有約 再見 罕見病
https://www.youtube.com/watch?v=1YXslT2s0Rc

魯豫有約 罕見病來襲
https://www.youtube.com/watch?v=tyHx3s4LBpM

罕見的幸福
https://www.youtube.com/watch?v=tFzvyBOXmSc
https://www.youtube.com/watch?v=0RY-OVXg2CA

讓我幫助你 遇罕見病 涅槃重生
https://www.youtube.com/watch?v=fIMLds4Lx1M

關心罕見病童 因為愛不孤單
https://www.youtube.com/watch?v=EOZGDFw8EGQ

公益中國 瓷娃娃罕見病的新希望
https://www.youtube.com/watch?v=5wJ4AC0usfY

罕見疾病居家照護暨簡易復健教學
看見罕見生命力
https://www.youtube.com/user/TFRDCF/videos
https://www.youtube.com/user/TFRDCF
https://www.youtube.com/playlist?list=PLHqHgGHQtixMcSLfVhXPPC2tCyfhd8axB

一生罕見的幸福
https://www.youtube.com/watch?v=1yhDDixYYvA

認識罕見疾病：法布瑞氏症
https://www.youtube.com/watch?v=3_vkx6QxZco

罕見疾病貓哭症
https://www.youtube.com/watch?v=kPcd3Ju63aA

罕病輪標舞勇士
https://www.youtube.com/watch?v=5y9PEjnU8po

鋼索上的尼娃娃 尼曼匹克症
https://www.youtube.com/watch?v=y2GAH04rcbw

美籍華人罹患全球罕見病 回國投身教育事業
http://tv.cntv.cn/video/VSET100153626094/7a601d8412753ddfe59a14790a4e5c44

罕見病讓我們堅強
http://tv.cntv.cn/video/C39085/ba9a7b240d993dde8a9ce7b90a4e5c44

罕見病來襲
http://news.cntv.cn/program/difangminglan/20121029/100202.shtml

罕見之痛
http://tv.cntv.cn/video/C10435/fe64f55bdd06483f9ead17397642d01e

我們是堅不可摧的“瓷娃娃”
http://tv.cntv.cn/video/C39085/646a0de487033ddef298417b0a4e5c44

罕見病家庭蒙陰霾 眾人齊助獲新生
http://tv.cctv.com/2017/05/16/VIDExLGc2FktVhEgW5paRf1I170516.shtml

患罕見病的女孩
http://tv.cctv.com/2016/05/08/VIDEsPsGr82AhWjfDJC5LcXc160508.shtml

魏瑞紅：致力公益的罕見病患者
http://tv.cntv.cn/video/C22046/670861b4f69c3ddee59a14790a4e5c44

第四個國際罕見病日
http://tv.cntv.cn/video/C21978/f682b65ffdcb425786aa9a61cea2eaa5

“瓷娃娃”的成長筆記
http://tv.cntv.cn/video/C10469/09d3b40cc73840e0afc6b2a1bc7eb844

罕見病人合唱團
http://tv.cctv.com/2013/12/05/VIDE1386174248082951.shtml
http://tv.cctv.com/2013/12/06/VIDE1386259576090963.shtml

徒步中國｜科普罕見病卡爾曼氏綜合征

https://v.qq.com/x/page/b0316lr12nt.html

卡爾曼氏症候群

http://cht.a-hospital.com/w/%E5%8D%A1%E5%B0%94%E6%9B%BC%E6%B0%8F%E7%BB%BC%E5%90%88%E7%97%87

http://www.baike.com/wiki/%E5%8D%A1%E5%B0%94%E6%9B%BC%E6%B0%8F%E7%BB%BC%E5%90%88%E7%97%87&prd=button_doc_entry

http://www.haodf.com/paperdetail/kaermanzonghezheng.htm

http://society.huanqiu.com/article/2017-07/11027980.html

《新浪健康》：卡爾曼氏綜合症---且行且珍惜

http://www.hanjianbing.org/content/details_12_1847.html

http://news.sohu.com/20170115/n478789119.shtml

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