Rare Disease Organization in China

LAM China LAM China
PKU联盟 The PKU Alliance
北京大学医学部医学遗传学系Peking University Health Science Center Department of medical genetics
北京福佑龙惠专科门诊 Beijing Similan specialist outpatient clinic
多发性硬化&视神经脊髓炎_新浪博客 Multiple sclerosis and neuromyelitis optica _ Sina blog
罕少疾病杂志 - Journal of Rare and Uncommon Diseases
MDAChina MDA China
克氏综合症_百度空间 Klinefelter syndrome _ Baidu space
中国运动神经元疾病关爱俱乐部 China motor neuron club
糖原累积症_新浪博客 Glycogen storage disease _ Sina blog
天津友爱家园 Tianjin hemophilia organization
中国肺动脉高压联盟_新浪博客 Chinese pulmonary hypertension alliance _ Sina blog
中国罕见疾病网 Chinese rare disease
中国结节性硬化症互助联盟China TSC Chinese tuberous sclerosis mutual alliance
中国遗传学会 The Genetics Society of China
中国遗传咨询网 The website of China genetic Disease counseling
中国运动神经元病网 The website Chinese motor neuron disease
重庆血友病_新浪博客 Chongqing hemophilia _ Sina blog
月亮孩子之家 - 中国白化病协会 China albinism Association
中国血友病协作组 Chinese hemophilia cooperative group
SMA之家(中国) SMA-China
rett病友会_新浪博客 RETT Patients group
中国尼曼匹克关爱中心_新浪博客 Chinese Niemann Peak care center _ Sina blog
中华罕见疾病学术网 The rare disease Academic Network
Chinadmd_新浪博客 China DMD _ Sina blog
中国血友病之家 China hemophilia home
中国科学院神经科学研究所 China hemophilia home
白塞氏病病友论坛 Behcet's disease patients Forum
重症肌无力病友之家 Myasthenia gravis group home
爱稀客 Pulmonary arterial hypertension
中国袖珍人之家 Home for little people with GHD
PNH病友之家 Home for PNH patients
小脑萎缩|共济失调-中国共济失调病友协会 Cerebellar atrophy | ataxia China ataxia patients Association
视网膜母细胞瘤互助联盟RBA Retinoblastoma mutual alliance RBA
蝴蝶宝贝关爱协会|大疱型表皮松解症EB Butterfly Baby Care Association | epidermolysis bullosa
rett家庭关爱中心 The RETT family care center
多发性硬化和视神经脊髓炎病友会 Multiple sclerosis and neuromyelitis optica patients Association
罕见病/疑难病会诊平台 Rare disease / difficult disease consultation platform
DMD关爱协会 DMD Care Association
马凡氏综合症病友互助平台 Marfan syndrome patient support platform
北京正宇粘多糖罕见病关爱中心 Beijing Zhengyu mucopolysaccharide rare disease care center
云南博爱血友病关爱中心 Yunnan Boai hemophilia care center
重庆市血友病康复协会 Chongqing City Association of hemophilia rehabilitation
贵州省爱知行血友病关爱协会 Guizhou province Aizhixing hemophilia care association
北京爱力重症肌无力罕见病关爱中心 Beijing Aili myasthenia gravis rare disease care center
中国MMA_新浪博客 China MMA_ Sina blog
DMD注册 DMD Registration
威廉宝宝-威廉姆斯综合症病友之家Baby William - Williams syndrome group home
北京医学会罕见病分会 The Beijing Medical Association rare disease branch
"长征之路"肺动脉高压和肺栓塞论坛 Pulmonary hypertension and pulmonary embolism Forum
The links are most in Chinese If you need to know more details about wich organization or want to make contact with them you could contact us require more English information.We will help you to make a connection with the local organization

Event & News

BEIJING - Nearly 10 million patients suffering from rare diseases in China are facing difficulties receiving proper diagnosis and treatment,Some patients gave up treatment even though imported medicine was available, adding that costly drug prices as well as incomplete medical security are major barriers.


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