Com.cn 罕见病关爱平台 - 关注罕见病，传递希望与爱

type: text

text: 罕见病发展中心(CORD) 中国罕见病发展中心

link: www.cord.org.cn

behavior: follow

type: text

text: 瓷娃娃罕见病关爱中心 成骨不全症等罕见病关爱

link: www.chinadolls.org.cn

behavior: follow

type: text

text: Orphanet(欧洲) 欧洲罕见病信息门户

link: www.orpha.net

behavior: follow

type: text

text: EURORDIS 欧洲罕见病组织联盟

link: www.eurordis.org

behavior: follow

type: text

text: Rare Diseases International 全球罕见病患者组织联盟

link: www.rarediseasesinternational.org

behavior: follow

type: text

text: 中国红十字基金会 人道救助与健康服务

link: www.crcf.org.cn

behavior: follow

type: text

text: 中国初级卫生保健基金会 卫生健康公益项目

link: www.cphcf.org.cn

behavior: follow

type: text

text: 中国妇女发展基金会 妇女健康公益项目

link: www.cwdf.org.cn

behavior: follow

type: text

text: 中国残疾人福利基金会 残疾人权益保护

link: www.cfdp.org

behavior: follow

type: text

text: EveryLife Foundation 罕见病患者权益倡导

link: everylifefoundation.org

behavior: follow

type: text

text: Muscular Dystrophy Association 肌肉萎缩症协会

link: www.mda.org

behavior: follow

type: text

text: National Hemophilia Foundation 美国血友病基金会

link: www.hemophilia.org

behavior: follow

type: text

text: Gaucher Disease Foundation 戈谢病基金会

link: www.gaucherdisease.org

behavior: follow

type: text

text: Marfan Foundation 马凡综合征基金会

link: www.marfan.org

behavior: follow

type: text

text: Prader-Willi Syndrome Association 普瑞德-威利综合征协会

link: www.pwsausa.org

behavior: follow

type: text

text: Turner Syndrome Society 特纳综合征协会

link: www.turnersyndrome.org

behavior: follow

type: text

text: Albinism Fellowship 白化病联谊会

link: www.albinism.org.uk

behavior: follow

type: text

text: Wilson Disease Association 威尔逊病协会

link: www.wilsonsdisease.org

behavior: follow

type: text

text: Rett Syndrome Research Trust 雷特综合征研究信托

link: reverserett.org

behavior: follow

type: text

text: Ehlers-Danlos Society 埃勒斯-当洛斯综合征协会

link: www.ehlers-danlos.com

behavior: follow

type: text

text: Osteogenesis Imperfecta Foundation 成骨不全基金会

link: www.oif.org

behavior: follow

type: text

text: Scleroderma Foundation 硬皮病基金会

link: www.scleroderma.org

behavior: follow

type: text

text: 北京协和医院罕见病中心 国家罕见病诊疗中心

link: www.pumch.cn

behavior: follow

type: text

text: 上海交大医学院罕见病研究所 罕见病基础与临床研究

link: www.shsmu.edu.cn

behavior: follow

type: text

text: 浙江大学医学院附属儿童医院 儿童罕见病诊治

link: www.zjuch.cn

behavior: follow

type: text

text: 中国医学科学院 医学研究与创新

link: www.cams.ac.cn

behavior: follow

type: text

text: 上海儿童医学中心 儿童罕见病专科

link: www.scmc.com.cn

behavior: follow

type: text

text: 四川大学华西医院 综合罕见病诊疗

link: www.wchscu.cn

behavior: follow

type: text

text: Mayo Clinic 美国梅奥诊所

link: www.mayoclinic.org

behavior: follow

type: text

text: Cleveland Clinic 美国克利夫兰诊所

link: my.clevelandclinic.org

behavior: follow

type: text

text: Boston Children's Hospital 波士顿儿童医院

link: www.childrenshospital.org

behavior: follow

type: text

text: Great Ormond Street Hospital 英国大奥蒙德街医院

link: www.gosh.nhs.uk

behavior: follow

type: text

text: NIH罕见病研究计划 美国国立卫生研究院

link: rarediseases.info.nih.gov

behavior: follow

type: text

text: National Center for Advancing Translational Sciences NIH转化科学中心

link: ncats.nih.gov

behavior: follow

type: text

text: ClinicalTrials.gov 全球临床试验数据库

link: clinicaltrials.gov

behavior: follow

type: text

text: EU Clinical Trials Register 欧盟临床试验注册

link: www.clinicaltrialsregister.eu

behavior: follow

type: text

text: 中国临床试验注册中心 中国临床试验注册平台

link: www.chictr.org.cn

behavior: follow

type: text

text: 贝瑞基因 遗传病基因检测

link: www.berrygenomics.com

behavior: follow

type: text

text: 诺禾致源 基因组学研究服务

link: www.novogene.com

behavior: follow

type: text

text: 安诺优达 基因检测技术服务

link: www.annoroad.com

behavior: follow

type: text

text: 金域医学 第三方医学检验

link: www.kingmed.com.cn

behavior: follow

type: text

text: Illumina 基因测序技术领导者

link: www.illumina.com

behavior: follow

type: text

text: 23andMe 个人基因检测服务

link: www.23andme.com

behavior: follow

type: text

text: GeneDx 临床基因诊断

link: www.genedx.com

behavior: follow

type: text

text: Invitae 医学遗传学检测

link: www.invitae.com

behavior: follow

type: text

text: Pharma Intelligence 医药情报与分析

link: pharmaintelligence.informa.com

behavior: follow

type: text

text: BioMarin Pharmaceutical 罕见病药物研发企业

link: www.biomarin.com

behavior: follow

type: text

text: 国家卫生健康委员会 国家卫健委官网

link: www.nhc.gov.cn

behavior: follow

type: text

text: 国家医疗保障局 国家医保局官网

link: www.nhsa.gov.cn

behavior: follow

type: text

text: 中国疾病预防控制中心 中国CDC官网

link: www.chinacdc.cn

behavior: follow

type: text

text: EMA(欧洲) 欧洲药品管理局

link: www.ema.europa.eu

behavior: follow

type: text

text: WHO Rare Diseases 世界卫生组织

link: www.who.int

behavior: follow

type: text

text: PMDA(日本) 日本药品医疗器械综合机构

link: www.pmda.go.jp

behavior: follow

type: text

text: 血友病之家 血友病患者互助平台

link: www.xueyou.org

behavior: follow

type: text

text: 渐冻人之家 ALS渐冻人关爱

link: www.als-home.org

behavior: follow

type: text

text: 马凡综合征之家 马凡综合征患者

link: www.marfan.org.cn

behavior: follow

type: text

text: 克罗恩病患者社区 炎症性肠病患者

link: www.ccfa.org.cn

behavior: follow

type: text

text: 多发性硬化患者组织 MS患者互助

link: www.ms-china.org

behavior: follow

type: text

text: RareConnect 国际罕见病患者社区

link: www.rareconnect.org

behavior: follow

type: text

text: Rare Disease Day 国际罕见病日

link: www.rarediseaseday.org

behavior: follow

type: text

text: Smart Patients 智能患者社区

link: www.smartpatients.com

behavior: follow

type: text

text: PubMed 全球医学文献数据库

link: pubmed.ncbi.nlm.nih.gov

behavior: follow

type: text

text: Orphadata Orphanet开放数据

link: www.orphadata.org

behavior: follow

type: text

text: Human Gene Mutation Database 人类基因突变数据库

link: www.hgmd.cf.ac.uk

behavior: follow

type: text

text: 健康界 医疗健康产业媒体

link: www.cn-healthcare.com

behavior: follow

type: text

text: 人民日报健康客户端 健康新闻与资讯

link: health.people.com.cn

behavior: follow

type: text

text: MedlinePlus 健康信息资源

link: medlineplus.gov

behavior: follow

type: text

text: UpToDate 临床决策支持系统

link: www.uptodate.com

behavior: follow

type: text

text: WebMD 健康信息门户

link: www.webmd.com

behavior: follow

type: text

text: 中华医学会遗传学分会 遗传学专业学会

link: www.cma.org.cn

behavior: follow

type: text

text: 罕见病合作交流会网站

link: rdforum.chinaicf.org

behavior: follow