血友病防治的进展课件

血友病防治的进展中国医学科学院中国协和医科大学血液学研究所血液病医院杨仁池血友病防治的进展中国医学科学院中国协和医科大学血液学研究所血概况血友病是一种遗传性出血性疾病，呈X连锁隐性遗传。本病是由于凝血因子VIII和IX基因突变使FVIII和FIX质或量的异常所致。血友病甲在男性人群中的患病率约为1/5000，占血友病总数的80%以上；血友病乙在男性人群中的患病率约为1/30000，占血友病总数的10%20%。

目前，本病在发展中国家（如我国）的致残率和病死率远高于发达国家。替代治疗是唯一有效的治疗措施。因此，这类患者也是发生肝炎和爱滋病的高危人群。概况血友病是一种遗传性出血性疾病，呈X连锁隐性遗传。本病是由

血友病的严重程度与出血

血友病甲和乙的分型

重型 中间型 轻型因子水平<1% 因子水平1%-5% 因子水平>5%特征是自发出血 轻微损伤出血 严重损伤、外科手术 和侵入性检查时出血每周可出血1-2次 每月可出血1次 可以从不出血关节受累为特征 可有关节受累 关节受累罕见(关节血肿)血友病的严重程度与出血血国内现状无足够的凝血因子制剂凝血因子制剂费用太高大多数血友病病人无医疗保险无全国性的血友病防治系统病人组织未获官方认可医护人员对本病认识不够病人及其家庭成员对本病认识不够多数医院不能对本病进行诊断（因为实验条件不具备）国内现状无足够的凝血因子制剂WFHGlobalSurvey2001/2Country Pop.DiagnosedNo.HTCPercapita(106)(%)FVIIIuse Australia1995153.0USA278871403.4Germany828265.5Iran6382100.5Russia1468140.1Egypt637570.1SouthAfrica4252100.6India99812560.01China12275WFHGlobalSurvey2001/2CountrWFHGlobalSurvey2004Australia:Hemophilia1070,vWD804USA:Hemophilia14886,vWD9801UK:Hemophilia6109,vWD5582Germany:Hemophilia4800,vWD3100Italy:Hemophilia5319,vWD2275Russia:Hemophilia7875,vWD3380Thailand:Hemophilia1325,vWD69Turkey:Hemophilia1929,vWD100SouthAfrica:Hemophilia1579,vWD463China:Hemophilia4131,vWD227WFHGlobalSurvey2004AustraliWFHGlobalSurvey2004调查的国家：96个覆盖的世界人口：85%血友病：120812例；vWD：43334例国家数据库：40个WFHGlobalSurvey2004调查的国家：96血友病防治的进展课件血友病防治的进展课件CurrentDataTianjinHemophiliaCenter:1627AnhuiHemophiliaCenter:717ShandongHemophiliaCenter:669JiangsuHematologyInstitute:389RuijinHospital:341FirstaffiliatedhospitalofSunYet-sanUniversity:250NanfangHospital:169Guangdongpeople’shospital:165PekingUnionCollegeHospital:79Thethirdpeople’shospitalofWenzhou:60BeijingPeople’sHospital:55Beijingchildrenhospital:47FirstaffiliatedhospitalofZhejiangUniversity:9Total:4577CurrentDataTianjinHemophiliaHemophiliaandrelateddisordersinTianjinHemophiliaCenter(1980-2002.6)Total:1312HemophiliaA:988(75.3%)HemophiliaB:186(14.2%)vWD：85(6.5%)FXIdeficiency：23(1.8%)AcquiredFVIIIdeficiency：15(1.1%)Others：15(1.1%)HemophiliaandrelateddisordeArthropathyindifferentages0-10:48/386(12.4%)(15.2%)10-20:76/251(30.3%)(35.0%)20-30:73/141(51.8%)(55.7%)>30:74/143(51.7%)(72.3%)Arthropathyindifferentages0血友病防治的进展课件血友病防治的进展课件血友病防治的进展课件AIDSinrecipientofcoagulationfactorconcentrates(1978-85)60-70%patientsbecameinfectedwithHIVThousandsofthemhavediedofAIDSHIVinfectionincreasestheriskofliverfailureafterinfectionwithHCV21-fold(Estimatedriskofliverfailure20yearsafterinfectionwithHCVis10%)AIDSinrecipientofcoagulati血友病防治的进展课件血友病防治的进展课件血友病防治的进展课件血友病防治的进展课件血友病防治的进展课件血友病防治的进展课件血友病的基因治疗世界上首例血友病基因治疗临床试验由薛京伦教授及其研究组完成FVIII或FIX基因缺陷小鼠的实验FVIII或FIX基因缺陷犬的实验现阶段的临床试验：载体-AAV、腺病毒、逆转录病毒等途径-肌肉注射、肝静脉等血友病的基因治疗世界上首例血友病基因治疗临床试验由薛京伦教授

血友病出血的治疗原则

早期治疗

-2小时以内,如有可能进行“家庭”治疗

“怀疑时治疗”

静脉穿刺时倍加小心

-合适的针头

(21-25G) -恰当的技术

-穿刺后加压

10-15分钟

避免导致血小板功能异常的药物

(阿斯匹林

/NSAID)

多学科方法

–“综合护理”血友血友病的出血部位

关节

肌肉

/软组织

口腔

鼻衄

血尿

胃肠道

擦伤/撕裂伤

中枢神经系统出血

损伤相关

–任何部位血友病的出血部位 关节替代治疗指南出血类型 FVIII剂量（U/kg） FIX剂量（U/kg） 因子水平(%)急性关节出血 10-20，q.12h 15,q.24 30-50肌肉内 20-30,q12h 40-60,q.24h 40-50CNS 50,q12h,或连续输注 100，然后50,q24h 开始100，然后 50-100，10-14d损伤或外科 50,q12h,或连续输注 100,q24h 100,然后50,

至伤口开始愈合， 然后30至痊愈咽后壁 50,q12h,4d 40,q24h,4d 50-70胃肠道 50,q12h,3d, 40,q24h,3d 50-100

或直至出血减轻 或直至出血减轻血尿 40，3-5d 40,3d 50拔牙 20,一次，EACA 40,一次，EACA 50 100mg/kg,7-10d 100mg/kg,7-10d腹膜后 50,q12h,6d 100,q24h,6d 开始100，然后 50，直至痊愈替代治疗指南China

APrioritizedProject,WFH1993–1997:EducationandTraining1997–2001/02:HemophiliaTwinningCentresandTreatmentCentreDevelopment2002–2004:ACountryProgramwithaHemophiliaTreatmentCentreNetwork,ChinaChina

APrioritizedProject,China

APrioritizedProject,WFHIn1993,WFHlaunchedapriorityprojecttopromoteandimproveHemophiliaCareinChina.Objectives:EducationTrainingAwarenessCareimprovementsOverthepast10yearssignificantprogresshasbeenAchievedthroughthreephasesofplanning.China

APrioritizedProject,1993–1997:

EducationandTrainingMajoractivitiesfocusedonHemophiliaconferencesforeducatingprofessionals,patients,familiesandhospitalstaff.Training,education,awarenessandparticipationbypatientgroupsincreased.WFHfellowshipswereawardedtophysicians,nurses,technologistsandsurgeons.Thisresultedinincreasedprofessionalswithexpertiseintheclinics.1993–1997:

EducationandTr1997–2001/02:

HemophiliaTwinningCentresand

TreatmentCentreDevelopmentUndertheWFHHemophiliaTwinningCentreprogram,4centreswereestablishedinChina.1997 HematologyInstitute,Tianjin/Calgary,Canada2000 NanfangHospital,Guangzhou/Ottawa,Canada2000HongKong/London,UK2001 RuijinHospital,Shanghai/CalgaryandOttawa HemophiliaTreatmentCentresweredevelopedinJinanandHefei.1997–2001/02:

HemophiliaTwPatientGroupActivities/LeadershipFivepatientleadersfromfourcitieswereidentifiedandreceivedleadershiptraininginMontreal(2000),Seville(2002)andBangkok(2004).ThisgroupestablishedtheHemophiliaHomeofChinadevelopingawebsite.Theyhavebeenveryactiveintheircommunitiespromotingpatientcareandparticipation.ManypatienteducationmaterialshavebeentranslatedintoChinesebythisgroup.PatientGroupActivities/LeaVisionforaNationalStrategy2001-2004Asthesecentresmatured,sharingofexpertiseandresourcesstrengthened.Throughthiscollaboration,thevalueofaNationalBodytocoordinatedevelopmentofHemophiliaCareinthecountrywasrealized.VisionforaNationalStrategyAttheRegionalHemophiliaCareConference,Guangzhou,Nov2001,theprofessionalgroupsagreedon:(1)Threepriorityprojectsforurgentdevelopment:

(i)ANationalRegistry (ii)HemophiliaNursing (iii)Coagulationtestingworkshops.(2)AstrategytoformulateaNationalBody,later formalizedasthe“HemophiliaTreatmentCentreCollaborativeNetwork,China”.AttheRegionalHemophiliaCarProjectProgressNationalRegistry

–Projectchair:Dr.RenchiYang,Tianjin.Established2002.Currentregistrants=4132patients(approx.%5ofestimatedPWHinChina).PosterpresentationinBangkok.HemophiliaNursing

–ProjectChair:Dr.JingSun,Nanfang.TwoHemophiliaNursingconferencesNovember2003,October2004.PosterpresentationinBangkok.CoagulationTestingWorkshop

–ProjectChair:Dr.XuefengWang,Shanghai,April2005ProjectProgressNationalRegis2002–2004:

ACountryProgramwitha

HemophiliaTreatmentCentreNetwork,ChinaBetween2002–2003Dr.MCPoonand Dr.KHLukevisitedcentresinBeijing,Tianjin,Jinan,Shanghai,HefeiandGuangzhouandreceivedunanimoussupportforaNationalNetwork.AproposalforaCountryProgramforChinawassupportedbyWFH.AWFHHemophiliaConferencewasheldtoestablishthenetworkin2004inShangdongBloodCenter,Jinan,Shangdong.2002–2004:

ACountryPrograWFHHemophiliaConference

March2004,Jinan,China

AtthisconferencetheHemophiliaTreatmentCentreCollaborativeNetworkChinawasformalized.Thesixfoundingmembersare:1.

HemophiliaCentre,InstitutionofHematology,Tianjin2.

HemophiliaCentre,NanfangHospital,Guangzhou3.

HemophiliaCentre,RuijinHospital,Shanghai4.

HemophiliaCentre,PekingUnionMedicalCollegeHospital,Beijing5.

HemophiliaCentre,AnhuiProvincialHospital,Hefei6.

HemophiliaClinic,ShandongBloodCentre,JinanAgreatachievementwasthevastrepresentationof150professionalsfrom25cities/provinces.WFHHemophiliaConference

MANETWORKOFHEMOPHILIATREATMENTCENTRESHASBEENESTABLISHEDASASOLIDFOUNDATIONTOPROMOTEHEMOPHILIA CAREINCHINAFORTHEFUTURE.ANETWORKOFHEMOPHILIATREATChallengesAheadMAJORTARGETS1.ProvideaccessiblecaretomorepatientswithHemophiliaOutreachprogramsEducationWorkshopsHemophiliaNursingPatientgroupleaders/activities

2.ProvideaffordablecaretomorepatientwithHemophiliaAlong-termgoal–tolobbyMOHtosupportaffordabletreatmentproductsforpatientsShort-termgoals–providingtreatmentforpatientswithprioritizedneedsChallengesAheadMAJORTARGETS现状全国血友病协作组成立于1985年，2000年重组中国于1990年成为世界血友病联盟（WFH）的国家成员单位（由中国医学科学院血液学研究所代表）WFH于1993年在天津举行了国际血友病培训中心讲习班姐妹中心：1997年，天津-加拿大Calgary，获WFH的1999年度姐妹中心奖；2000年，广州-渥太华；香港-伦敦；2002年，上海-Calgary与渥太华人员培训：已有16人获WFH资助，多数已在国外完成培训现状全国血友病协作组成立于1985年，2000年重组PublicationLuL,etal.Haemophilia2004,10(5):661-664WangT,etal.Haemophilia2004;10(4):370-375ZhangL,etal.Haemophilia2003,9(5):696-702ZhangL,etal.ChinMedJ.2004;117(6):953-5YangR,etal.Haemophilia1999,5(6):453-456JiL,etal.Haemophilia1998,4(5):721-724PublicationLuL,etal.HaemopAcknowledgementMembersoftheNationalHemophiliaRegistryGroupofChina:Dr.PeifangDing,Dr.JingSun,Dr.XuefengWang,Dr.JingshengWu,Dr.RenchiYangandDr.YongqiangZhaoConsultants:Prof.Man-ChiuPoon,Calgary,CANADA,andDr.K.H.Luke,Ottawa,CANADAProf.ChanggengRuan,Prof.HongliWang,Prof.ChunguangWen,Prof.ShuyanZengandDr.RunhuiWuHemophiliaPatientsUnionofChinaAcknowledgementMembersofthe血友病防治的进展课件血友病防治的进展课件

其实，世上最温暖的语言，“不是我爱你，而是在一起。”

所以懂得才是最美的相遇！只有彼此以诚相待，彼此尊重，相互包容，相互懂得，才能走的更远。相遇是缘，相守是爱。缘是多么的妙不可言，而懂得又是多么的难能可贵。否则就会错过一时，错过一世！择一人深爱，陪一人到老。一路相扶相持，一路心手相牵，一路笑对风雨。在平凡的世界，不求爱的轰轰烈烈；不求誓言多么美丽；唯愿简单的相处，真心地付出，平淡地相守，才不负最美的人生；不负善良的自己。人海茫茫，不求人人都能刻骨铭心，但求对人对己问心无愧，无怨无悔足矣。大千世界，与万千人中遇见，只是相识的开始，只有彼此真心付出，以心交心，以情换情，相知相惜，才能相伴美好的一生，一路同行。然而，生活不仅是诗和远方，更要面对现实。如果曾经的拥有，不能天长地久，那么就要学会华丽地转身，学会忘记。忘记该忘记的人，忘记该忘记的事儿，忘记苦乐年华的悲喜交集。人有悲欢离合，月有阴晴圆缺。对于离开的人，不必折磨自己脆弱的生命，虚度了美好的朝夕；不必让心灵痛苦不堪，弄丢了快乐的自己。擦汗眼泪，告诉自己，日子还得继续，谁都不是谁的唯一，相信最美的风景一直在路上。人生，就是一场修行。你路过我，我忘记你；你有情，他无意。谁都希望在正确的时间遇见对的人，然而事与愿违时，你越渴望的东西，也许越是无情无义地弃你而去。所以美好的愿望，就会像肥皂泡一样破灭，只能在错误的时间遇到错的人。岁月匆匆像一阵风，有多少故事留下感动。愿曾经的相遇，无论是锦上添花，还是追悔莫及；无论是青涩年华的懵懂赏识，还是成长岁月无法躲避的经历……愿曾经的过往，依然如花芬芳四溢，永远无悔岁月赐予的美好相遇。其实，人生之路的每一段相遇，都是一笔财富，尤其亲情、友情和爱情。在漫长的旅途上，他们都会丰富你的生命，使你的生命更充实，更真实；丰盈你的内心，使你的内心更慈悲，更善良。所以生活的美好，缘于一颗善良的心，愿我们都能善待自己和他人。一路走来，愿相亲相爱的人，相濡以沫，同甘共苦，百年好合。愿有情有意的人，不离不弃，相惜相守，共度人生的每一个朝夕……直到老得哪也去不了，依然是彼此手心里的宝，感恩一路有你！感谢您对文章的阅读跟下载，希望本篇文章能帮助到您，建议您下载后自己先查看一遍，把用不上的部分页面删掉哦，当然包括最后一页，最后祝您生活愉快!其实，世上最温暖的语言，“不是我爱你，而是在一起。”

血友病防治的进展中国医学科学院中国协和医科大学血液学研究所血液病医院杨仁池血友病防治的进展中国医学科学院中国协和医科大学血液学研究所血概况血友病是一种遗传性出血性疾病，呈X连锁隐性遗传。本病是由于凝血因子VIII和IX基因突变使FVIII和FIX质或量的异常所致。血友病甲在男性人群中的患病率约为1/5000，占血友病总数的80%以上；血友病乙在男性人群中的患病率约为1/30000，占血友病总数的10%20%。

目前，本病在发展中国家（如我国）的致残率和病死率远高于发达国家。替代治疗是唯一有效的治疗措施。因此，这类患者也是发生肝炎和爱滋病的高危人群。概况血友病是一种遗传性出血性疾病，呈X连锁隐性遗传。本病是由

血友病的严重程度与出血

血友病甲和乙的分型

重型 中间型 轻型因子水平<1% 因子水平1%-5% 因子水平>5%特征是自发出血 轻微损伤出血 严重损伤、外科手术 和侵入性检查时出血每周可出血1-2次 每月可出血1次 可以从不出血关节受累为特征 可有关节受累 关节受累罕见(关节血肿)血友病的严重程度与出血血国内现状无足够的凝血因子制剂凝血因子制剂费用太高大多数血友病病人无医疗保险无全国性的血友病防治系统病人组织未获官方认可医护人员对本病认识不够病人及其家庭成员对本病认识不够多数医院不能对本病进行诊断（因为实验条件不具备）国内现状无足够的凝血因子制剂WFHGlobalSurvey2001/2Country Pop.DiagnosedNo.HTCPercapita(106)(%)FVIIIuse Australia1995153.0USA278871403.4Germany828265.5Iran6382100.5Russia1468140.1Egypt637570.1SouthAfrica4252100.6India99812560.01China12275WFHGlobalSurvey2001/2CountrWFHGlobalSurvey2004Australia:Hemophilia1070,vWD804USA:Hemophilia14886,vWD9801UK:Hemophilia6109,vWD5582Germany:Hemophilia4800,vWD3100Italy:Hemophilia5319,vWD2275Russia:Hemophilia7875,vWD3380Thailand:Hemophilia1325,vWD69Turkey:Hemophilia1929,vWD100SouthAfrica:Hemophilia1579,vWD463China:Hemophilia4131,vWD227WFHGlobalSurvey2004AustraliWFHGlobalSurvey2004调查的国家：96个覆盖的世界人口：85%血友病：120812例；vWD：43334例国家数据库：40个WFHGlobalSurvey2004调查的国家：96血友病防治的进展课件血友病防治的进展课件CurrentDataTianjinHemophiliaCenter:1627AnhuiHemophiliaCenter:717ShandongHemophiliaCenter:669JiangsuHematologyInstitute:389RuijinHospital:341FirstaffiliatedhospitalofSunYet-sanUniversity:250NanfangHospital:169Guangdongpeople’shospital:165PekingUnionCollegeHospital:79Thethirdpeople’shospitalofWenzhou:60BeijingPeople’sHospital:55Beijingchildrenhospital:47FirstaffiliatedhospitalofZhejiangUniversity:9Total:4577CurrentDataTianjinHemophiliaHemophiliaandrelateddisordersinTianjinHemophiliaCenter(1980-2002.6)Total:1312HemophiliaA:988(75.3%)HemophiliaB:186(14.2%)vWD：85(6.5%)FXIdeficiency：23(1.8%)AcquiredFVIIIdeficiency：15(1.1%)Others：15(1.1%)HemophiliaandrelateddisordeArthropathyindifferentages0-10:48/386(12.4%)(15.2%)10-20:76/251(30.3%)(35.0%)20-30:73/141(51.8%)(55.7%)>30:74/143(51.7%)(72.3%)Arthropathyindifferentages0血友病防治的进展课件血友病防治的进展课件血友病防治的进展课件AIDSinrecipientofcoagulationfactorconcentrates(1978-85)60-70%patientsbecameinfectedwithHIVThousandsofthemhavediedofAIDSHIVinfectionincreasestheriskofliverfailureafterinfectionwithHCV21-fold(Estimatedriskofliverfailure20yearsafterinfectionwithHCVis10%)AIDSinrecipientofcoagulati血友病防治的进展课件血友病防治的进展课件血友病防治的进展课件血友病防治的进展课件血友病防治的进展课件血友病防治的进展课件血友病的基因治疗世界上首例血友病基因治疗临床试验由薛京伦教授及其研究组完成FVIII或FIX基因缺陷小鼠的实验FVIII或FIX基因缺陷犬的实验现阶段的临床试验：载体-AAV、腺病毒、逆转录病毒等途径-肌肉注射、肝静脉等血友病的基因治疗世界上首例血友病基因治疗临床试验由薛京伦教授

血友病出血的治疗原则

早期治疗

-2小时以内,如有可能进行“家庭”治疗

“怀疑时治疗”

静脉穿刺时倍加小心

-合适的针头

(21-25G) -恰当的技术

-穿刺后加压

10-15分钟

避免导致血小板功能异常的药物

(阿斯匹林

/NSAID)

多学科方法

–“综合护理”血友血友病的出血部位

关节

肌肉

/软组织

口腔

鼻衄

血尿

胃肠道

擦伤/撕裂伤

中枢神经系统出血

损伤相关

–任何部位血友病的出血部位 关节替代治疗指南出血类型 FVIII剂量（U/kg） FIX剂量（U/kg） 因子水平(%)急性关节出血 10-20，q.12h 15,q.24 30-50肌肉内 20-30,q12h 40-60,q.24h 40-50CNS 50,q12h,或连续输注 100，然后50,q24h 开始100，然后 50-100，10-14d损伤或外科 50,q12h,或连续输注 100,q24h 100,然后50,

至伤口开始愈合， 然后30至痊愈咽后壁 50,q12h,4d 40,q24h,4d 50-70胃肠道 50,q12h,3d, 40,q24h,3d 50-100

或直至出血减轻 或直至出血减轻血尿 40，3-5d 40,3d 50拔牙 20,一次，EACA 40,一次，EACA 50 100mg/kg,7-10d 100mg/kg,7-10d腹膜后 50,q12h,6d 100,q24h,6d 开始100，然后 50，直至痊愈替代治疗指南China

APrioritizedProject,WFH1993–1997:EducationandTraining1997–2001/02:HemophiliaTwinningCentresandTreatmentCentreDevelopment2002–2004:ACountryProgramwithaHemophiliaTreatmentCentreNetwork,ChinaChina

APrioritizedProject,China

APrioritizedProject,WFHIn1993,WFHlaunchedapriorityprojecttopromoteandimproveHemophiliaCareinChina.Objectives:EducationTrainingAwarenessCareimprovementsOverthepast10yearssignificantprogresshasbeenAchievedthroughthreephasesofplanning.China

APrioritizedProject,1993–1997:

EducationandTrainingMajoractivitiesfocusedonHemophiliaconferencesforeducatingprofessionals,patients,familiesandhospitalstaff.Training,education,awarenessandparticipationbypatientgroupsincreased.WFHfellowshipswereawardedtophysicians,nurses,technologistsandsurgeons.Thisresultedinincreasedprofessionalswithexpertiseintheclinics.1993–1997:

EducationandTr1997–2001/02:

HemophiliaTwinningCentresand

TreatmentCentreDevelopmentUndertheWFHHemophiliaTwinningCentreprogram,4centreswereestablishedinChina.1997 HematologyInstitute,Tianjin/Calgary,Canada2000 NanfangHospital,Guangzhou/Ottawa,Canada2000HongKong/London,UK2001 RuijinHospital,Shanghai/CalgaryandOttawa HemophiliaTreatmentCentresweredevelopedinJinanandHefei.1997–2001/02:

HemophiliaTwPatientGroupActivities/LeadershipFivepatientleadersfromfourcitieswereidentifiedandreceivedleadershiptraininginMontreal(2000),Seville(2002)andBangkok(2004).ThisgroupestablishedtheHemophiliaHomeofChinadevelopingawebsite.Theyhavebeenveryactiveintheircommunitiespromotingpatientcareandparticipation.ManypatienteducationmaterialshavebeentranslatedintoChinesebythisgroup.PatientGroupActivities/LeaVisionforaNationalStrategy2001-2004Asthesecentresmatured,sharingofexpertiseandresourcesstrengthened.Throughthiscollaboration,thevalueofaNationalBodytocoordinatedevelopmentofHemophiliaCareinthecountrywasrealized.VisionforaNationalStrategyAttheRegionalHemophiliaCareConference,Guangzhou,Nov2001,theprofessionalgroupsagreedon:(1)Threepriorityprojectsforurgentdevelopment:

(i)ANationalRegistry (ii)HemophiliaNursing (iii)Coagulationtestingworkshops.(2)AstrategytoformulateaNationalBody,later formalizedasthe“HemophiliaTreatmentCentreCollaborativeNetwork,China”.AttheRegionalHemophiliaCarProjectProgressNationalRegistry

–Projectchair:Dr.RenchiYang,Tianjin.Established2002.Currentregistrants=4132patients(approx.%5ofestimatedPWHinChina).PosterpresentationinBangkok.HemophiliaNursing

–ProjectChair:Dr.JingSun,Nanfang.TwoHemophiliaNursingconferencesNovember2003,October2004.PosterpresentationinBangkok.CoagulationTestingWorkshop

–ProjectChair:Dr.XuefengWang,Shanghai,April2005ProjectProgressNationalRegis2002–2004:

ACountryProgramwitha

HemophiliaTreatmentCentreNetwork,ChinaBetween2002–2003Dr.MCPoonand Dr.KHLukevisitedcentresinBeijing,Tianjin,Jinan,Shanghai,HefeiandGuangzhouandreceivedunanimoussupportforaNationalNetwork.AproposalforaCountryProgramforChinawassupportedbyWFH.AWFHHemophiliaConferencewasheldtoestablishthenetworkin2004inShangdongBloodCenter,Jinan,Shangdong.2002–2004:

ACountryPrograWFHHemophiliaConference

March2004,Jinan,China

AtthisconferencetheHemophiliaTreatmentCentreCollaborativeNetworkChinawasformalized.Thesixfoundingmembersare:1.

HemophiliaCentre,InstitutionofHematology,Tianjin2.

HemophiliaCentre,NanfangHospital,Guangzhou3.

HemophiliaCentre,RuijinHospital,Shanghai4.

HemophiliaCentre,PekingUnionMedicalCollegeHospital,Beijing5.

HemophiliaCentre,AnhuiProvincialHospital,Hefei6.

HemophiliaClinic,ShandongBloodCentre,JinanAgreatachievementwasthevastrepresentationof150professionalsfrom25cities/provinces.WFHHemophiliaConference

MANETWORKOFHEMOPHILIATREATMENTCENTRESHASBEENESTABLISHEDASASOLIDFOUNDATIONTOPROMOTEHEMOPHILIA CAREINCHINAFORTHEFUTURE.ANETWORKOFHEMOPHILIATREATChallengesAheadMAJORTARGETS1.ProvideaccessiblecaretomorepatientswithHemophiliaOutreachprogramsEducationWorkshopsHemophiliaNursingPatientgroupleaders/activities

2.Provideaff