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Date Posted: 20:00:59 10/10/17 Tue
Author: jessica
Author Host/IP: d1-210-0-143-118-on-nets.com / 118.143.0.210
Subject: 本港孤兒症患者及家屬支援團體

本港孤兒症患者及家屬支援團體:
夏約書孤兒症基金會
http://www.obg.cuhk.edu.hk/fetal-medicine/fetal-medicine_services/iem/

http://www.jhforphandisease.org/


兒童危重病基金
http://paed.hku.hk/ccdf/

香港黏多醣症暨罕有遺傳病互助小組
http://www.hk-mps.com/tc/index.html


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

外國及區域孤兒症組織

澳洲:

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

加拿大:

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

歐盟:

BLACKWAN Foundation (研究孤兒症的瑞士基金會)
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#


菲律賓:

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

台灣:

財團法人罕有疾病基金會(TFRD)
http://www.tfrd.org.tw/

英國:

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

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

美國:

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


其他連結


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

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