Booboo.cn 罕见病关爱平台 - 关注罕见病，传递希望与爱

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text: 中国罕见病联盟 中国罕见病联盟官方网站

link: www.crd-union.org

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text: 罕见病发展中心(CORD) 中国罕见病发展中心

link: www.cord.org.cn

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text: 病痛挑战基金会 病痛挑战公益基金会

link: www.icicle.org.cn

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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

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text: NORD(美国) 美国国家罕见病组织

link: rarediseases.org

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text: Orphanet(欧洲) 欧洲罕见病信息门户

link: www.orpha.net

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text: EURORDIS 欧洲罕见病组织联盟

link: www.eurordis.org

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text: Global Genes 全球罕见病倡导组织

link: globalgenes.org

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

link: www.rarediseasesinternational.org

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text: 中国红十字基金会 人道救助与健康服务

link: www.crcf.org.cn

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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

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text: 爱佑慈善基金会 儿童医疗救助

link: www.ayfoundation.org

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text: 北京新阳光慈善基金会 血液病患者救助

link: www.newsunshinecharity.org

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text: 中国出生缺陷干预救助基金会 出生缺陷干预与救助

link: www.bdisrf.org

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text: 中国妇女发展基金会 妇女健康公益项目

link: www.cwdf.org.cn

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link: www.cfdp.org

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text: 思源工程 健康扶贫与救助

link: www.siyuangongcheng.org

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text: Genetic Alliance 遗传疾病联盟

link: www.geneticalliance.org

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text: EveryLife Foundation 罕见病患者权益倡导

link: everylifefoundation.org

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text: 美儿SMA关爱中心 脊髓性肌萎缩症关爱

link: www.smacare.cn

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text: Muscular Dystrophy Association 肌肉萎缩症协会

link: www.mda.org

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text: Cystic Fibrosis Foundation 囊性纤维化基金会

link: www.cff.org

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

link: www.hemophilia.org

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text: Gaucher Disease Foundation 戈谢病基金会

link: www.gaucherdisease.org

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text: ALS Association 渐冻人协会

link: www.als.org

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text: Fabry Support & Information Group 法布雷病支持组织

link: www.fabry.org

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text: Marfan Foundation 马凡综合征基金会

link: www.marfan.org

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text: National PKU Alliance 苯丙酮尿症联盟

link: www.npkua.org

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

link: www.pwsausa.org

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text: Turner Syndrome Society 特纳综合征协会

link: www.turnersyndrome.org

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text: Albinism Fellowship 白化病联谊会

link: www.albinism.org.uk

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text: Wilson Disease Association 威尔逊病协会

link: www.wilsonsdisease.org

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text: Pompe Community 庞贝病社区

link: www.pompecommunity.org

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text: Huntington's Disease Society 亨廷顿舞蹈症协会

link: hdsa.org

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

link: reverserett.org

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

link: www.ehlers-danlos.com

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text: Osteogenesis Imperfecta Foundation 成骨不全基金会

link: www.oif.org

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text: Scleroderma Foundation 硬皮病基金会

link: www.scleroderma.org

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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

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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

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text: 复旦儿科医院罕见病中心 儿童罕见病诊疗

link: www.chfudan.com

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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

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text: 中国医学科学院 医学研究与创新

link: www.cams.ac.cn

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link: www.anzhen.org

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link: www.scmc.com.cn

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text: 广州市妇女儿童医疗中心 妇儿罕见病诊疗

link: www.gzwch.org

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text: 四川大学华西医院 综合罕见病诊疗

link: www.wchscu.cn

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text: 中山大学附属第一医院 遗传代谢病诊治

link: www.gzsums.net

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text: Mayo Clinic 美国梅奥诊所

link: www.mayoclinic.org

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text: Cleveland Clinic 美国克利夫兰诊所

link: my.clevelandclinic.org

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text: Johns Hopkins Medicine 约翰霍普金斯医学院

link: www.hopkinsmedicine.org

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

link: www.childrenshospital.org

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

link: www.gosh.nhs.uk

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text: NIH罕见病研究计划 美国国立卫生研究院

link: rarediseases.info.nih.gov

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

link: ncats.nih.gov

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text: ClinicalTrials.gov 全球临床试验数据库

link: clinicaltrials.gov

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

link: www.clinicaltrialsregister.eu

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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

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text: 华大基因 基因检测与遗传咨询

link: www.genomics.cn

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text: 贝瑞基因 遗传病基因检测

link: www.berrygenomics.com

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text: 诺禾致源 基因组学研究服务

link: www.novogene.com

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text: 安诺优达 基因检测技术服务

link: www.annoroad.com

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text: 金域医学 第三方医学检验

link: www.kingmed.com.cn

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text: Illumina 基因测序技术领导者

link: www.illumina.com

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text: 23andMe 个人基因检测服务

link: www.23andme.com

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text: GeneDx 临床基因诊断

link: www.genedx.com

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text: Invitae 医学遗传学检测

link: www.invitae.com

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text: Pharma Intelligence 医药情报与分析

link: pharmaintelligence.informa.com

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text: Rare Disease Report 罕见病药物研发动态

link: www.raredr.com

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

link: www.biomarin.com

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text: 国家卫生健康委员会 国家卫健委官网

link: www.nhc.gov.cn

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text: 国家药品监督管理局 国家药监局官网

link: www.nmpa.gov.cn

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text: 国家医疗保障局 国家医保局官网

link: www.nhsa.gov.cn

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text: 中国疾病预防控制中心 中国CDC官网

link: www.chinacdc.cn

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text: 国家卫健委罕见病诊疗登记系统 罕见病登记平台

link: www.nrdrs.org.cn

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text: 中国残联 中国残疾人联合会

link: www.cdpf.org.cn

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text: 国家基本公共卫生服务项目 公共卫生服务

link: www.nbphsp.org.cn

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text: FDA(美国) 美国食品药品监督管理局

link: www.fda.gov

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text: EMA(欧洲) 欧洲药品管理局

link: www.ema.europa.eu

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text: WHO Rare Diseases 世界卫生组织

link: www.who.int

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text: TGA(澳大利亚) 澳大利亚药品管理局

link: www.tga.gov.au

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text: PMDA(日本) 日本药品医疗器械综合机构

link: www.pmda.go.jp

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text: 血友病之家 血友病患者互助平台

link: www.xueyou.org

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text: PKU家园 苯丙酮尿症患者平台

link: www.pkujiayuan.org

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text: 渐冻人之家 ALS渐冻人关爱

link: www.als-home.org

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text: 中国白化病家园 白化病患者互助

link: www.albinism.cn

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link: www.gauchercare.cn

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link: www.fabrycare.cn

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text: 罕见病病友社区 罕见病患者交流

link: bbs.raredisease.cn

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link: www.rdfamily.org

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text: 庞贝氏罕见病关爱中心 庞贝氏症关爱

link: www.pompecare.cn

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text: 马凡综合征之家 马凡综合征患者

link: www.marfan.org.cn

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link: www.dmd-care.cn

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link: www.mpscare.cn

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link: www.mgcare.cn

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text: 银屑病病友互助网 银屑病患者互助

link: www.pso.org.cn

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text: 罕见病联盟患者服务平台 综合患者服务

link: service.crd-union.org

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text: 脊髓小脑性共济失调关爱联盟 SCA患者互助

link: www.sca-china.org

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text: 结节性硬化症患者组织 TSC患者关爱

link: www.tsc-china.org

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link: www.ccfa.org.cn

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link: www.ms-china.org

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text: 系统性红斑狼疮社区 SLE患者交流

link: www.lupus-china.org

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text: RareConnect 国际罕见病患者社区

link: www.rareconnect.org

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text: Inspire 健康社区平台

link: www.inspire.com

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text: PatientsLikeMe 患者经验分享平台

link: www.patientslikeme.com

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text: Rare Disease Day 国际罕见病日

link: www.rarediseaseday.org

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text: Smart Patients 智能患者社区

link: www.smartpatients.com

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text: 小红书罕见病话题 生活方式分享

link: www.xiaohongshu.com

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text: Facebook Rare Disease Groups Facebook罕见病群组

link: www.facebook.com

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text: PubMed 全球医学文献数据库

link: pubmed.ncbi.nlm.nih.gov

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text: OMIM 在线人类孟德尔遗传

link: www.omim.org

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text: Orphadata Orphanet开放数据

link: www.orphadata.org

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text: DECIPHER 基因组变异数据库

link: decipher.sanger.ac.uk

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

link: www.hgmd.cf.ac.uk

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text: 健康界 医疗健康产业媒体

link: www.cn-healthcare.com

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text: 人民日报健康客户端 健康新闻与资讯

link: health.people.com.cn

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text: 罕见病医生培训平台 罕见病医学教育

link: edu.raredisease.cn

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text: MedlinePlus 健康信息资源

link: medlineplus.gov

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text: UpToDate 临床决策支持系统

link: www.uptodate.com

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link: www.webmd.com

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text: Medscape 医学专业资讯

link: www.medscape.com

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text: 中华医学会遗传学分会 遗传学专业学会

link: www.cma.org.cn

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text: 医学遗传学继续教育 遗传咨询师培训

link: genetics-edu.cn

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link: med.cnki.net

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link: med.cqvip.com

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text: Rare Disease Advisor 罕见病临床指南

link: www.rarediseaseadvisor.com

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text: Patient Worthy 患者新闻资讯

link: patientworthy.com

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link: rdforum.chinaicf.org

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