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Hong Kong Paediatric Rheumatism Association ­»´ä¤p¸£µäÁY¯g¨ó·|


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http://www.hknmda.org.hk/index.php

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http://rarediseasecg.com/tc/aboutus.php

Hong Kong Rare Disease Concern Group ­»´ä¬õ¤Q¦r·|¥Ì°i­}¤¤¤ß®Õ¤Í·|
https://www.facebook.com/jfkcaa

Hong Kong Red Cross John F. Kennedy Centre Alumni Association ­»´ä¯f¤H²Õ´Áp·ù


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http://www.marfan.org.hk/

Hong Kong Marfan Syndrome Association ­»´ä±×µø­«¼v¯f±wªÌ¨ó·|
https://www.sites.google.com/site/hkasdvs/

Hong Kong Association of Squint and Double Vision Sufferers ­»´äÖߦh¿}º[¨u¦³¿ò¶Ç¯f¤¬§U¤p²Õ
http://www.hk-mps.com/

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http://www.retina.org.hk/

Retina Hong Kong ®L¬ù®Ñ©t¨à¯g°òª÷·|
http://www.jhforphandisease.org/zh/who_we_are/mission

Joshua Hellmann Foundation for Orphan Disease ­»´ä¨ôÅ@¸q¤u¨ó·|
http://www.hkccva.com/

Hong Kong Credible Care Volunteers Association Limited ¿ò¶Ç©Ê¤ß«ß°òª÷·|
http://www.sadshk.org/zh/founder.php

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http://www.tfrd.org.tw

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http://www.hanjianbing.org

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http://www.hanjianbing.org/database/index.html

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http://www.xpwilli.org/

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http://www.debra.org.cn/

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http://www.china-dmd.org/

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http://tv.cctv.com/2016/05/08/VIDEsPsGr82AhWjfDJC5LcXc160508.shtml

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http://tv.cntv.cn/video/C22046/670861b4f69c3ddee59a14790a4e5c44

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http://tv.cntv.cn/video/C21978/f682b65ffdcb425786aa9a61cea2eaa5

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http://tv.cctv.com/2013/12/05/VIDE1386174248082951.shtml
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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

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

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


¡m¦^À³¥»¤å¡n

2017/10/7 ¤W¤È 10:36:27
¦^À³ªÌ : gogo lee   
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¦^À³ 1

International Federation of Marfan Syndrome Organizations ¡] IFMSO ¡^
°ê»Ú°¨¤Z¤óºî¦X¯g²Õ´Áp·|
http://www.marfanworld.org/
IFMSO ¦®¦b¬°¤£¦P°ê®a¤Î¦a°Ï¤§°¨¤Z¤óºî¦X¯g¯f¤H²Õ´´£¨Ñ¥þ²y©Êªº·¾³q¥­¥x¡A²{¦³ 22 ­Ó°ê®a©Î¦a°Ï¤§²Õ´¥[¤J IFMSO ¡Cºô¯¸¦C¥X·|­û²Õ´¤§ºô¯¸¤ÎÁpµ¸¤èªk¡A¨Ã¦³¥H©¹·|ij¸ê®Æ®w¤Î³Ì·s·|ij¦w±Æ±¡ªp¡Cºô¯¸¥ç¦³°¨¤Z¤óºî¦X¯g¬ã¨s¸g¶O¤ÎÁܽд£¥æ«Øij®Ñ®ø®§¡C

The National Marfan Foundation 
¥þ°ê°¨¤Z¤ó°òª÷ ( ¬ü°ê )
http://www.marfan.org/
¥Ñ°¨¤Z¤óºî¦X¯g¯f¤H¤Î®a¤H¦¨¥ß©ó 1981 ªº¦Û§U©Ê²Õ´¡C¦®¦b¦V¯f¤H¡B®aÄݤÎÂåÅ@¬É·Ç½Tµo©ñ³Ì·s°¨¤Z¤óºî¦X¯g°T®§¡A«ü¨Ñ·¾³q¥­¥x¥H¤À¨É¸gÅç¤Î¤¬¬Û¤ä«ù¡A¨Ã¤ä«ù¤Î±À°Ê¦³Ãö¦¹¯f¤§¬ã¨s¡Cºô¯¸¦³¤j¶q¦³Ãö°¨¤Z¤óºî¦X¯g¤§¤¶²Ð¡B¯f¤H¶·ª¾¤Î³Ì·s¬ã¨sµ²ªGµ¥¡C

The Canadian Marfan Association 
¥[®³¤j°¨¤Z¤ó²Õ´
http://www.marfan.ca/
¥Ñ Elizabeth McHenry ¤Î¨ä¥L¯f¤H»PÂå¥Í©ó 1986 ¦¨¥ß¡A°£¦V¦V¯f¤H¡B®aÄݤÎÂåÅ@¬É·Ç½Tµo©ñ³Ì·s°¨¤Z¤óºî¦X¯g°T®§¥~¡A¨Ã­P¤O¥[±j¤½²³¹ï¦¹¯f¤§»{ÃѤÎĵı¡A¹ªÀy¯f¤H¦Û²Õ¤ä«ù¤p²Õ¡C¦¹²Õ´¥ç¤ä«ù¤Î±À°Ê¦³Ãö°¨¤Z¤óºî¦X¯g¤§¬ã¨s¡C

Marfan Association UK 
­^Áp¨¹°¨¤Z¤ó²Õ´
http://www.marfan.org.uk

Stanford University Center for Marfan Syndrome and Related Connective Tissue Disorders 
¥v¤¦¦ò¤j¾Ç°¨¤Z¤óºî¦X¯g¤Î¬ÛÃö³sô²Õ´¥¢½Õ¯g¬ã¨s¤¤¤ß
http://marfan.stanford.edu/

¥xÆW°¨¤Z¤§®a
http://www.marfan.org.tw/

¤é¥»ÇÚÇçÇÑÇ{Çï¨ó会
http://www.marfan.jp/
    SADS¬ü°ê°òª÷·|
     http://www.sads.org
    SADS­^°ê°òª÷·|
     http://www.sadsuk.org
    ­»´äÂåºÞ§½
     http://www.ha.org.hk
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     http://www.hkcchk.com
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     http://www.aed.com.hk
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     http://www.careheart.org.hk
    World Heart Federation
     http://www.world-heart-federation.org
    BrugadaDrugs.org
     http://www.brugadadrugs.org

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http://www.jhforphandisease.org/zh/orphan_diseases/resources
¦³Ãö¯«¸g - ¦Ù¦×¯e¯f¸ê®Æ¤Î²Õ´
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

 



 

2017/10/7 ¤W¤È 10:41:55
¦^À³ªÌ : gg   
¤k
¦^À³ 2

¨u¨£¯e¯f±Ð¨|Á¿®y 
https://www.youtube.com/user/Rarediseasecg

 

 



 

2017/10/7 ¤W¤È 11:39:51
¦^À³ªÌ : lulu   
¤k
¦^À³ 3

°]¹Îªk¤H¨u¨£¯e¯f°òª÷·|(¥xÆW)
http://www.tfrd.org.tw/tfrd/
http://www.tfrd.org.tw/tfrd/link_a
¨u¨£¿ò¶Ç¯e¯f¤@ÂI³q(¥xÆW)
http://web.tfrd.org.tw/
The National Organization for Rare Disorders (NORD) (USA)
https://rarediseases.org/
Canadian Organization for Rare Disorders (CORD)
http://www.raredisorders.ca/
Rare Diseases Europe
http://www.eurordis.org/
Hong Kong Paediatric Rheumatism Association ­»´ä¤p¸£µäÁY¯g¨ó·|
http://hkscaa.org/
¬ÛÃöºô§}
http://hkscaa.org/main_link.php
ªÀ°Ï¸ê·½
http://hkscaa.org/main_social_resources.php
¨àµ£¦M­«¯f°òª÷ Children's Catastrophic Disease Foundation 
http://paed.hku.hk/ccdf/
Joshua Hellmann Foundation
Newborn Metabolic Screening Program

®L¬ù®Ñ – ·s¥Í¨à¥NÁ¯f¿z¬d­p¹º
http://www.obg.cuhk.edu.hk/fetal-medicine/fetal-medicine_services/iem/
 http://www.obg.cuhk.edu.hk/fetal-medicine/overview/



 

2017/10/7 ¤U¤È 12:13:23
¦^À³ªÌ : toby   
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¦^À³ 4

­»´äªº¨u¯f±wªÌ²Õ´
­»´ä¹p¯S¤ó¯g¨ó·|
Hong Kong Rett Syndrome Association 
http://www.hkrett.org/
­»´ä¤Ñ¨Ïºî¦X¯g°òª÷·|
Hong Kong Angelman Syndrome Foundation 
http://www.hkasf.org/
­»´äµ²¸`©Êµw¤Æ©Ê¨ó·|
Tuberous Sclerosis Complex Association of Hong Kong 
https://www.facebook.com/groups/465376130305528/?fref=ts
­»´ä¯«¸gÅÖºû½F¨ó·|
Hong Kong Neurofibromatosis Association 
https://hknfa.org.hk/
¤p¦Ó¦P¨u¦³°©Àf¯e¯f°òª÷·|
Little People of Hong Kong 
http://www.lphk.org/
¤Ö«C­·¨ó·|
Hong Kong Paediatric Rheumatism Association 
http://www.hkpra.org/
­»´ä¤p¸£µäÁY¯g¨ó·|
Hong Kong Spinocerebellar Ataxia Association
http://www.hkscaa.org/
 ­»´ä¦Ù°·¨ó·|
Hong Kong Neuro-muscular Disease Association 
http://www.hknmda.org.hk/
­»´ä¨u¨£¯e¯fÃöª`²Õ
Hong Kong Rare Disease Concern Group 
http://rarediseasecg.com/tc/aboutus.php
­»´ä¬õ¤Q¦r·|¥Ì°i­}¤¤¤ß®Õ¤Í·|
Hong Kong Red Cross John F. Kennedy Centre Alumni Association 
https://www.facebook.com/jfkcaa
­»´ä¯f¤H²Õ´Áp·ù
Hong Kong Alliance of Patients’ Organization 
http://www.hkapo.org.hk/
­»´ä°¨¤Z¤óºî¦X¯g¨ó·|
Hong Kong Marfan Syndrome Association 
http://www.marfan.org.hk/
­»´ä±×µø­«¼v¯f±wªÌ¨ó·|
Hong Kong Association of Squint and Double Vision Sufferers 
https://www.sites.google.com/site/hkasdvs/
­»´äÖߦh¿}º[¨u¦³¿ò¶Ç¯f¤¬§U¤p²Õ
Hong Kong Mucopolysaccharidoses & Rare Genetic Diseases Mutual Aid Group 
http://www.hk-mps.com/
­»´ä´_±d·|
The Hong Kong Society for Rehabilitation 
http://www.rehabsociety.org.hk/
­»´äµøºô½¤¯fÅܨó·|
Retina Hong Kong 
http://www.retina.org.hk/
®L¬ù®Ñ©t¨à¯g°òª÷·|
Joshua Hellmann Foundation for Orphan Disease 
http://www.jhforphandisease.org/zh/who_we_are/mission
­»´ä¨ôÅ@¸q¤u¨ó·|
Hong Kong Credible Care Volunteers Association Limited 
http://www.hkccva.com/
¿ò¶Ç©Ê¤ß«ß°òª÷·|
Sudden Arrhythmia Death Syndromes Foundation
http://www.sadshk.org/zh/founder.php
PNH¯f¤Í¤§®a(­»´ä¯¸)-
http://hk.pnhchina.org/
¨u¨£¯e¯f¨t¦C
https://www.hk01.com/%E6%B8%AF%E8%81%9E/9022/-%E7%BD%95%E8%A6%8B%E7%96%BE%E7%97%85%E7%B3%BB%E5%88%97-%E4%B8%80-%E6%AF%8D%E5%AD%90%E5%85%B5%E5%A5%AE%E6%88%B0%E6%B2%92%E5%90%8D%E5%AD%97%E7%9A%84%E7%97%85%E9%AD%94

https://www.hk01.com/%E6%B8%AF%E8%81%9E/9035/-%E7%BD%95%E8%A6%8B%E7%96%BE%E7%97%85%E7%B3%BB%E5%88%97-%E4%BA%8C-%E8%9C%98%E8%9B%9B%E4%BA%BA%E7%97%87%E6%82%A3%E8%80%85-%E9%AB%98%E5%A4%A7%E8%BA%AB%E8%BB%80%E8%97%8F%E8%84%86%E5%BC%B1%E5%BF%83%E7%AA%A9

https://www.hk01.com/%E6%B8%AF%E8%81%9E/9044/-%E7%BD%95%E8%A6%8B%E7%96%BE%E7%97%85%E7%B3%BB%E5%88%97-%E4%B8%89-%E6%82%A3%E8%80%85%E4%B9%8B%E8%8B%A6-%E9%9B%A3%E7%A2%BA%E8%A8%BA%E8%87%B4%E9%9B%A3%E6%89%BE%E6%94%AF%E6%8F%B4



 

2017/10/7 ¤U¤È 12:32:08
¦^À³ªÌ : trodic   
¤k
¦^À³ 5

CPR  ¤ßªÍ´_µdªk
http://www.sadshk.org/zh/video.php
https://www.youtube.com/user/SADSHKORG/videos?sort=dd&view=0&shelf_id=0
¿ò¶Ç©Ê¤ß«ß°òª÷·|
Sudden Arrhythmia Death Syndromes Foundation
http://www.sadshk.org/zh/index.php
http://www.sadshk.org/
SADS HK Foundation 
https://www.youtube.com/channel/UCBS-fkuZonqizSulRBhLdfw

 



 

2017/10/11 ¤W¤È 11:02:56
¦^À³ªÌ : tony   
¤k
¦^À³ 6

¥»´ä©t¨à¯g±wªÌ¤Î®aÄݤ䴩¹ÎÅé¡G
®L¬ù®Ñ©t¨à¯g°òª÷·|
http://www.obg.cuhk.edu.hk/fetal-medicine/fetal-medicine_services/iem/

http://www.jhforphandisease.org/


¨àµ£¦M­«¯f°òª÷
http://paed.hku.hk/ccdf/

­»´äÂH¦hÁÞ¯gº[¨u¦³¿ò¶Ç¯f¤¬§U¤p²Õ
http://www.hk-mps.com/tc/index.html


Chinese University Hong Kong neonatal screening (Metabolic Diseases)
https://www.fetalmedicine.hk/en/iem.asp

¥~°ê¤Î°Ï°ì©t¨à¯g²Õ´

¿D¬w¡G

SMILE Foundation
http://www.smilefoundation.com.au/

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The Canadian Society for Mucopolysaccharide & Related Diseases Inc.
http://www.mpssociety.ca/page/home.aspx

¼Ú·ù¡G

BLACKWAN Foundation  (¬ã¨s©t¨à¯gªº·ç¤h°òª÷·|)
http://www.blackswanfoundation.ch/

European Organization for Rare Diseases (EURORDIS)
http://www.eurordis.org/

Orphanet
http://www.orpha.net/consor/cgi-bin/index.php?lng=EN#


µá«ß»«¡G

Philippine Society for Orphan Disorders
http://www.psod.org.ph/ver2/

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°]¹Îªk¤H¨u¦³¯e¯f°òª÷·|(TFRD)
http://www.tfrd.org.tw/

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Genetic Alliance UK
http://www.geneticalliance.org.uk/index.html

Rare Disease UK
http://www.raredisease.org.uk/

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C.A.I.D. Foundation  (Stop Childhood Autoinflammatory Diseases)
http://www.stopcaidnow.org/

Children's R.A.R.E Disease Network
http://www.crdnetwork.org/

EveryLife Foundation for Rare Diseases
http://www.everylifefoundation.org/TopNav/ContactUs.aspx

Hide & Seek Foundation for Lysosomal Disease Research
http://www.hideandseek.org/

National Organization for Rare Disorders (NORD)
http://www.rarediseases.org/

Office of Rare Diseases Research, National Institutes of Health
http://rarediseases.info.nih.gov/

United Mitochondrial Disease Foundation
http://www.umdf.org/site/c.otJVJ7MMIqE/b.5472191/k.BDB0/Home.htm


¨ä¥L³sµ²


Genetic Alliance
 http://www.geneticalliance.org/

Rare Disease Day
 http://www.rarediseaseday.org/

Rare Disease Search Engine
 http://raredisease.org/

Orphanet
 http://www.orpha.net/consor/cgi-bin/index.php?lng=EN

Sanford - Burnham Medical Research Institute
http://www.sanfordburnham.org/default.aspx



 

2017/10/13 ¤W¤È 11:12:36
¦^À³ªÌ : caro   
¤k
¦^À³ 7

Âå¥Í»P§A¡G¥NÁ¯f ( ªì¥ÍÀ¦¨à )

https://www.youtube.com/watch?v=wlQVQN4_ex8

¥ý¤Ñ©Ê¥NÁ¯ʥF¯g

https://baike.baidu.com/item/%E5%85%88%E5%A4%A9%E6%80%A7%E4%BB%A3%E8%B0%A2%E7%BC%BA%E9 %99%B7

http://www.baike.com/wiki/%E5%85%88%E5%A4%A9%E6%80%A7%E4%BB%A3%E8%B0%A2%E7%BC%BA%E9 %99%B7&prd=button_doc_entry


¥ý¤Ñ©Ê¯e¯f

http://www.baike.com/wiki/%E5%85%88%E5%A4%A9%E6%80%A7%E7%96%BE%E7%97%85&prd=button_doc_entry

https://baike.baidu.com/item/%E4%BB%A3%E8%B0%A2%E7%97%85


¤¤¤j»P®L¬ù®Ñ©t¨à¯g°òª÷·|Äâ¤â¦X§@
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http://www.jhforphandisease.org/node/46

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À¦¨à4ºw¦å Åç30ºØ¥NÁ¯f

http://hk.apple.nextmedia.com/news/art/20130619/18303572

Dr.ªF¡G¥NÁ¯ʥF¥i­P©R ªì¥ÍÀ¦©yºÉ¦­ÀËÅç

http://hk.on.cc/hk/bkn/cnt/news/20171013/bkn-20171013063013421-1013_00822_001.html'


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¯à·´ªì¥Í¨à¤@¥Í

http://hk.apple.nextmedia.com/news/art/20151029/19352035

ŪªÌMailbox¡GÀË´ú¥ý¤Ñ©Ê¥NÁ¯f

https://news.mingpao.com/pns/dailynews/web_tc/article/20161206/s00005/1480961758355

§Ú°ê¨C¦~¬ù30¸U·s¥Í¨à¦³¥ý¤Ñ©Ê¿ò¶Ç¥NÁ¯f

http://politics.people.com.cn/n/2014/1123/c70731-26076760.html

·Ç¤÷¥Àª`·N «Â°|³]ªì¥ÍÀ¦¿z´ú¡u¥ý¤Ñ©Ê¥NÁ¯ʳ´¡v

http://std.stheadline.com/instant/articles/detail/494241-%E9%A6%99%E6%B8%AF-%E6%BA%96%E7%88%B6%E6%AF%8D% E6%B3%A8%E6%84%8F+%E5%A8%81%E9%99%A2%E8%A8%AD%E5%88%9D%E7%94%9F%E5%AC%B0%E7% AF%A9%E6%B8%AC%E3%80%8C%E5%85%88%E5%A4%A9%E6%80%A7%E4%BB%A3%E8%AC%9D%E7%BC% BA%E9%99%B7%E3%80%8D

65ºØ¿ò¶Ç¥NÁ©ʯf¥i¥Ó½Ð¥X¥Í¯Ê³´±Ï§U

https://kknews.cc/health/6kyz5am.html

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https://read01.com/ny8kKm.html#.WeArUokqlGQ

ªì¥ÍÀ¦§K¶OÅç¥NÁ¯f 2¦~¤º¦³±æ²[»\¥þ´ä

https://topick.hket.com/article/1911207/%E5%88%9D%E7%94%9F%E5%AC%B0%E5%85%8D%E8%B2%BB%E9%A9%97 %E4%BB%A3%E8%AC%9D%E7%97%85%E3%80%802%E5%B9%B4%E5%85%A7%E6%9C%89%E6%9C%9B%E6 %B6%B5%E8%93%8B%E5%85%A8%E6%B8%AF

 



 

2017/10/13 ¤U¤È 01:34:14
¦^À³ªÌ : channy   
¤k
¦^À³ 8

¨u¨£¯f

 Jade  

https://www.youtube.com/watch?v=tcBLbajf0Pk

 ¤Ñ¨Ïªº·L¯º

https://www.youtube.com/watch?v=diPXFKnt2GU

 §Ú¨à±w¤F¨u¦³¯f

https://www.youtube.com/watch?v=lM2k1U1pArg

 ¤@­Ó³£¤£¯à¤Ö

https://www.youtube.com/watch?v=C3fZWvGFguo

§Ú®aªº¨à¤l

https://www.youtube.com/watch?v=C41Y8xmEl0U

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https://www.youtube.com/watch?v=kPcd3Ju63aA

³zµø¨u¨£¯f¡G¹p¯S¤ó¯g¡]¤@¡^¤£ªv¯g¤k¨à¤é´_¤é°h¤Æ¶ý¶ý¡Gµ¥§A»¡·R§Ú

https://www.youtube.com/watch?v=D7XgDSOZ0XU

TFRDCF°]¹Îªk¤H¨u¨£¯e¯f°òª÷·|

https://www.youtube.com/user/TFRDCF/videos?disable_polymer=1

https://www.youtube.com/user/TFRDCF/featured?disable_polymer=1

°]¹Îªk¤H¨u¨£¯e¯f°òª÷·|

http://www.tfrd.org.tw/tfrd/


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https://www.youtube.com/watch?v=TJOFmKshnHM

20140605ªÀ·|¯à¨£«×¾D¹J¨u¨£¯f

https://www.youtube.com/watch?v=TIgOhrYVcrY

“Åý§ÚÀ°§U§A”20160615¹J¨ì¨£¯f¯Iºn­«¥Í

http://tv.cntv.cn/video/VSET100191981123/b3a739b4f34d3de0d490706a0a4e5c44

“¤¤°ê¥¿¯à¶q”20141012¬üÄyµØ¤H¿©±w¥þ²y¨u¨£¯f¦^°ê§ë¨­±Ð¨|¨Æ·~

http://tv.cntv.cn/video/VSET100153626094/7a601d8412753ddfe59a14790a4e5c44


“¤j¤ý¤p¤ý”20131114¨u¨£¯fÅý§Ú­Ì°í±j

http://tv.cntv.cn/video/C39085/ba9a7b240d993dde8a9ce7b90a4e5c44

[»¡¥X§Aªº¬G¨Æ]¨u¨£¯f¨Óŧ20121205

http://news.cntv.cn/program/difangminglan/20121206/103386.shtml

[©¯©¯¥Xµo]¨u¨£¯f®a®x»X³±Åµ²³¤H»ô§UÀò·s¥Í

http://tv.cctv.com/2017/05/16/VIDExLGc2FktVhEgW5paRf1I170516.shtml

“¹D¼wÆ[¹î¡]¤é¼½ª©¡^”20160508±wªÌ¨u¨£¯fªº¤k«Ä

http://tv.cctv.com/2016/05/08/VIDEsPsGr82AhWjfDJC5LcXc160508.shtml

“¤¤°ê¦n¤H”20140419¨u¨£ªº¤O¶q

http://tv.cntv.cn/video/C34772/251b88d488023dde2599e0080a4e5c44

“¤¤°ê¬G¨Æ”20150322¯S®í­Ñ¼Ö³¡ - ²¡«½«½ªº¿ûÅK¥Í¬¡

http://tv.cntv.cn/video/VSET100182988694/25802fd490e73ddfe18feff20a4e5c44

“¹D¼wÆ[¹î¡]¤é¼½ª©¡^”20111122¤C­Ó²¡«½«½¡]¤W¡^

http://tv.cntv.cn/video/C10373/294b4b2ce5074f4f9ff22cb69ccdb2fe

“¤¤°ê¦n¤H”20141129·ÏÃú¤k«Ä¨àªº³Ì¬ü®É¥ú

http://tv.cntv.cn/video/C34772/f92a901438123ddfc685ec190a4e5c44

¤¤°ê¦n¤H

http://tv.cntv.cn/videoset/C34772

 



 

2017/10/13 ¤U¤È 02:25:41
¦^À³ªÌ : connie   
¤k
¦^À³ 9

¡i§öªL¦b½u¡jªì¥ÍÀ¦¨à¥NÁ¯f¿z¬d

https://www.youtube.com/watch?v=I34jfDmMA4c

¡i§öªL¦b½u¡j¿ò¶Ç¯f«Ä¤l¬¡¤F130¤Ñ

https://www.youtube.com/watch?v=DnUTn363mWE

¡i§öªL¦b½u¡j¹p¯S¤ó¯g

https://www.youtube.com/watch?v=vwCsGbvr9ws

¡i§öªL¦b½u¡j­««¬¦a¤¤®ü³h¦å

https://www.youtube.com/watch?v=Btw3UTonDCo

¡i§öªL¦b½u¡j¦å¤Í¯fªº¹w¨¾ªvÀø

https://www.youtube.com/watch?v=HZKfc28DrGM


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https://www.youtube.com/watch?v=6xUj1R1_Hik

¡i§öªL¦b½u¡j¨u¨£¯f

https://www.youtube.com/watch?v=sBRihmYSvFk

 

ªì¥Í¢ÐÅç¦å ¹w¨¾¥NÁ¯f

http://orientaldaily.on.cc/cnt/news/20130619/00176_105.html

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https://baike.baidu.com/item/%E6%96%B0%E7%94%9F%E5%84%BF%E7%AD%9B%E6%9F%A5

ªì¥ÍÀ¦¥NÁ¯f¿z¬d ¬F©²¥[§Ö±À
§K¶O´ú24ºØ¯f ¾¬2¦~¤ºÂл\¥þ´ä

http://paper.hket.com/article/1911209/%E5%88%9D%E7%94%9F%E5%AC%B0%E4%BB%A3%E8%AC%9D%E7%97%85%E7%AF%A9%E6%9F%A5%20%E6%94%BF%E5%BA%9C%E5%8A%A0%E5%BF%AB%E6%8E%A8

·Ç¤÷¥Àª`·N «Â°|³]ªì¥ÍÀ¦¿z´ú¡u¥ý¤Ñ©Ê¥NÁ¯ʳ´¡v

https://www.singtaousa.com/%E5%8D%B3%E6%99%82/%E5%8D%B3%E6%99%82%E6%B8%AF%E8%81%9E/259441-%E6%BA%96%E7%88%B6%E6%AF%8D%E6%B3%A8%E6%84%8F-%E5%A8%81%E9%99%A2%E8%A8%AD%E5%88%9D%E7%94%9F%E5%AC%B0%E7%AF%A9%E6%B8%AC%E3%80%8C%E5%85%88%E5%A4%A9%E6%80%A7%E4%BB%A3%E8%AC%9D%E7%BC%BA%E9%99%B7%E3%80%8D/

¡uªø¤£¤j¡v¯fµ£ ³Q¼J¡u¤p¸G¤H¡vÃø¼õ

http://paper.wenweipo.com/2017/01/08/YO1701080010.htm

 


°ü²£¬ì

The Department of Obstetrics and Gynaecology
The University of Hong Kong

http://www.obsgyn.hku.hk/

O&G CUHK – Department of Obstetrics and Gynaecology

http://www.obg.cuhk.edu.hk/

Department of Obstetrics & Gynaecology
¥ì§Q¨F§BÂå°|°ü²£¬ì

https://www3.ha.org.hk/qeh/department/ong/Introduction%20(Internet%20-%20Chinese).htm

 



 

2017/10/17 ¤W¤È 10:56:30
¦^À³ªÌ : candy   
¤k
¦^À³ 10

¤¤°ê´Ý¯e¤HÁp¦X·|

http://www.cdpf.org.cn/

http://www.cdpf.org.cn/ywzz/xxh_317/

¤¤°ê±d´_¬ã¨s¤¤¤ß

http://www.crrc.com.cn/

 ¤¤°êÅ¥¤O»y¨¥±d´_¬ã¨s¤¤¤ß

http://www.crrcdc.org.cn/

¥_¨Ê«ö¼¯Âå°|

http://www.massage-hospital.com/

¤¤°ê´Ý¯e¤HÂø»xªÀ

http://www.chinadp.net.cn/

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http://www.cjfj.org/

¤¤°ê´Ý¯e¤HÁp¦X·|´N·~ªA°È«ü¾É¤¤¤ß

http://www.cdpes.org.cn/

¤¤°êª¼¤å¥Xª©ªÀ

http://www.cbph.org.cn/

¤¤°êª¼¤å¹Ï®ÑÀ]

http://www.blc.org.cn/

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http://www.caspd.org.cn/

¤¤°ê´Ý¯e¤HÃÀ³N¹Î

http://www.mydream.org.cn/

µØ®L¥Xª©ªÀ

http://www.hxph.com.cn/

¤¤°ê´ÝÁpµØ®L¤å¤Æ¶°¹Î

http://www.smygw.com/index.asp

¤¤°ê´Ý¯e¤HºÖ§Q°òª÷·|

http://www.cfdp.org/

¤¤°êª¼¤H¨ó·|

http://www.zgmx.org.cn/before/Index.aspx

http://www.zgmx.org.cn/

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http://www.zglx.org.cn/

¤¤°êªÏ´Ý¤H¨ó·|

http://www.cappd.org/

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http://capidr.org.cn/

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http://cappdr.org/

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http://www.cclions.org.cn/

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http://www.cdpf.org.cn/ztzl/special/CDRS/

http://www.cdpf.org.cn/

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¤¤°ê¯S¶ø©e­û·|

http://www.sochina.org.cn/

http://www.specialolympics.org/Default.aspx?LangType=2052

http://www.specialolympics.org/



 

2017/10/20 ¤U¤È 02:19:09
¦^À³ªÌ : connie   
¤k
¦^À³ 11

¤¤°ê¥X¥Í¯Ê³´¨¾ªv³ø§i¡]2012¡^

http://www.moh.gov.cn/wsb/pxwfb/201209/55840.shtml

http://www.moh.gov.cn/wsb/index.shtml

http://www.moh.gov.cn/

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http://politics.people.com.cn/n/2012/0915/c1026-19015908.html

¡m¤¤°ê¥X¥Í¯Ê³´¨¾ªv³ø§i¡]2012¡^¡n°Ýµª

http://www.gov.cn/fwxx/jk/2012-09/13/content_2223565.htm

 



 

2017/10/24 ¤U¤È 03:10:16
¦^À³ªÌ : toby   
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¦^À³ 12
¿ò¶Ç©Ê¤ß«ß¥¢±`¯g--¬ðµM¤ßŦ¯fµoÖ`¦º
 
http://gbcode.rthk.hk/TuniS/app4.rthk.hk/elearning/healthpedia/article.php?tag=%E5%B8%83%E5%8A%A0%E9%81%94%E7%B6%9C%E5%90%88%E7%97%87&cid=0&id=168
 
 
https://zh.wikipedia.org/wiki/%E5%B8%83%E9%AD%AF%E6%A0%BC%E9%81%94%E6%B0%8F%E7%97%87%E5%80%99%E7%BE%A4
 
 
SADS HK Foundation
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https://www.youtube.com/user/SADSHKORG/videos?sort=dd&view=0&shelf_id=0
 
https://www.youtube.com/channel/UCBS-fkuZonqizSulRBhLdfw
 
 
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http://www.sadshk.org/zh/
 
http://www.sadshk.org/
 
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http://std.stheadline.com/archive/fullstory.asp?andor=or&year1=2014&month1=6&day1=23&year2=2014&month2=6&day2=23&category=all&id=20140623a06&keyword1=&keyword2=
 
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http://orientaldaily.on.cc/cnt/news/20140623/00176_076.html
 
 
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http://news.stheadline.com/dailynews/content_hk/2008/04/11/48202.asp


 

2017/11/7 ¤U¤È 02:43:33
¦^À³ªÌ : tracy   
¤k
¦^À³ 13
­»´ä¨ß®BµõÃE¨ó·|
 
http://www.cleftlip.org.hk/
 
 


 

2017/11/8 ¤W¤È 11:01:21
¦^À³ªÌ : tonnie   
¤k
¦^À³ 14

Orphanet¡G¤HÃþ³Ì¥þªº¨u¨£¯fª¾ÃÑ®w

http://www.orpha.net/consor/cgi-bin/index.php

http://www.orpha.net/

http://www.jianshu.com/p/ecda3ebc518a

http://www.sohu.com/a/18746147_119250

¨u¨£¯e¯fÂåÀø¥­¥x

http://www.pediascape.cn/rare/

http://www.shanghai.gov.cn/shanghai/node2314/node2319/n31973/n31991/u21ai1111976.shtml

OMIM¼Æ¾Ú®w
http://www.omim.org/

DECIPHER¼Æ¾Ú®w
https://decipher.sanger.ac.uk/index

DGV¼Æ¾Ú®w
http://dgv.tcag.ca/dgv/app/home

¨u¨£¯e¯f¤@ÂI³q-¯e¯f¸ê®Æ®w

http://web.tfrd.org.tw/genehelp/diseaseDatabase.html?selectedIndex=0

¨u¨£¯e¯f¤@ÂI³q

http://web.tfrd.org.tw/

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http://www.pharmaceutic.idv.tw/news/news.php?page=1

¥x¤jÂå°|°ò¦]Âå¾Ç³¡

http://www.ntuh.gov.tw/gene/default.aspx

¥þ°ê»{ÃÒ¿ò¶Ç¿Ô¸ß¤¤¤ß
http://www.ntuh.gov.tw/gene/link/default.aspx

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http://www.ntuh.gov.tw/gene/link/Pages/cytolist1.aspx

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http://www.ntuh.gov.tw/gene/pages/%E9%81%BA%E5%82%B3%E6%80%A7%E5%8F%8A%E7%BD%95%EF%A8%8A%E7%96%BE%E7%97%85%E6%AA%A2%E9%A9%97%E6%A9%9F%E6%A7%8B.pdf

°]¹Îªk¤H¨u¨£¯e¯f°òª÷·| 

http://www.tfrd.org.tw/tfrd/

°ê¥~¬ÛÃöºô¯¸

http://www.tfrd.org.tw/tfrd/link_d

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https://zh.wikipedia.org/zh-hk/%E7%BD%95%E8%A7%81%E7%97%85

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http://fdrdl.cmuh.org.tw/

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https://www.hkpl.gov.hk/tc/extension-activities/event-detail/88251/rare-diseases-of-the-new-born-detection-and-management

Á¿®y­«·Å (¿ý­µ)  
https://mmis.hkpl.gov.hk/coverpage/-/coverpage/view?_coverpage_WAR_mmisportalportlet_actual_q=%28%20dc.title.series%3A%28%22%E8%82%B2%E9%86%AB%E9%80%A0%E6%89%8D%22%29%29%20AND+%28%20verbatim_dc.category.category%3A%28%22Video%22%29%20OR+verbatim_dc.category.category%3A%28%22Audio%22%29%29&_coverpage_WAR_mmisportalportlet_sort_field=dc.publicationdate_bsort&p_r_p_-1078056564_c=QF757YsWv5%2FH7zGe%2FKF%2BFPxOpNwA071J&_coverpage_WAR_mmisportalportlet_sort_order=desc&_coverpage_WAR_mmisportalportlet_o=0


Á¿®y­«·Å (¿ý¼v)
https://mmis.hkpl.gov.hk/coverpage/-/coverpage/view?_coverpage_WAR_mmisportalportlet_actual_q=%28%20dc.title.series%3A%28%22%E8%82%B2%E9%86%AB%E9%80%A0%E6%89%8D%22%29%29%20AND+%28%20verbatim_dc.category.category%3A%28%22Video%22%29%20OR+verbatim_dc.category.category%3A%28%22Audio%22%29%29&_coverpage_WAR_mmisportalportlet_sort_field=dc.publicationdate_bsort&p_r_p_-1078056564_c=QF757YsWv5%2FH7zGe%2FKF%2BFL72OOE4MDdD&_coverpage_WAR_mmisportalportlet_sort_order=desc&_coverpage_WAR_mmisportalportlet_o=1



 

2017/11/8 ¤U¤È 09:07:20
¦^À³ªÌ : caro   
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¦^À³ 15

°ê»Ú¨u¨£¯f»P©t¨àÃĤj·|¡]ICORD¡^
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¤¤°ê¨u¨£¯f²Õ´¦W¿ý
http://www.raredisease.cn/organization!index
http://www.raredisease.cn/

 



 

2017/11/8 ¤U¤È 10:04:42
¦^À³ªÌ : yoyo   
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http://www.meier.org.cn/



 

2017/11/9 ¤U¤È 01:56:34
¦^À³ªÌ : kennie   
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¦^À³ 17

¤¤°ê°ê®a¨u¨£¯fµù¥UÅé¨t

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http://www.hlhcn.cn/

 



 

2017/11/9 ¤U¤È 02:27:07
¦^À³ªÌ : marylie   
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¦^À³ 18

²Ä¤Q¤G©¡°ê»Ú¨u¨£¯f»P©t¨àÃĤj·|º[²Ä¤»©¡¤¤°ê¨u¨£¯f°ª®p½×¾Â

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http://www.hjb.yaohuoban.com/

§Ú­Ìªº®a¶é

http://www.ourfamilychina.org/



 

2017/11/10 ¤W¤È 10:52:56
¦^À³ªÌ : carry   
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2017/11/10 ¤U¤È 01:49:38
¦^À³ªÌ : tiny   
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¦^À³ 20

¥xÆW¨u¨£¯e¬ÛÃöºô¯¸

http://www.tfrd.org.tw/tfrd/link_b

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ù¼z¤ÒÆ`ÃC°òª÷·| http://nncf.org/home/index.php

 ¿ò¶Çµo¨|»P¨t²Î¥Íª«¾Ç¬ã¨s«Ç http://www2.cch.org.tw/4612

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¦æ¬F°|½Ã¥Í¸p°ê¥Á°·±d§½¿ò¶Ç¿Ô¸ßªA°Èµ¡¤f http://gene.bhp.doh.gov.tw

¦æ¬F°|½Ã¥Í¸p°ê¥Á°·±d§½°·±d¤E¤E http://health99.doh.gov.tw

 ¦æ¬F°|½Ã¥Í¸p°ê¥Á°·±d§½ªk³W¿è­n http://www.bhp.doh.gov.tw/BHP/index.jsp

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¤¤µØ¥Á°ê­ð¤ó¯gÃö·RªÌ¨ó·| http://www.down-syndrome.org.tw/

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¤¤µØ¥Á°ê¤HÃþ¿ò¶Ç¾Ç·| http://www.genes-at-taiwan.com.tw/

 ¤¤¥¡°·±d«OÀI§½ http://www.nhi.gov.tw/
     
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http://www.huada.tv/

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¡m°·±d¤§¸ô¡n 20110917 ®a±ÚÅ]©G——¦å¤Í¯f

http://tv.cntv.cn/video/C10606/0466b3bc51d649b646247e813379f9e7

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http://www.genomics.cn/index

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http://www.genomics.cn/navigation/show_navigation?nid=2395

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http://www.ipmch.com.cn/

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http://www.crn.net.cn/tw/index.html

http://www.crn.net.cn/

 



 

2017/11/11 ¤W¤È 08:16:56
¦^À³ªÌ : peter   
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2017/12/11 ¤U¤È 11:09:42
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2018/1/1 ¤U¤È 04:45:37
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