九州体育

九州体育信息
出生缺陷(遗传代谢病)救助项目申请指南
2018-09-13 15:06     浏览:


fujianshengchushengquexian(yichuandaixiebing)jiuzhuxiangmushiyouguojiaweishengjiankangweijiuzhoutiyusihezhongguochushengquexianganyujiuzhujijinhuilianhezaifujianshengkaizhandeyixiangmianxiangyichuandaixiebinghuanerdeshehuigongyixiangmu,zhizaiweifuhetiaojiandeyichuandaixiejibinghuanerdezhenduanjizhiliaotigongjiuzhu。

什么是遗传代谢病?遗传代谢病有什么特点?

九州体育yichuandaixiebingshiyileiyoujiyinquexianyinqibianmadanbaizhigongnengzhangai,congerdaozhirentidaixiegongnengquexiandejibing。yichuandaixiebingyibufenbingyinyoujiyinyichuandaozhi,haiyouyibufenshihoutianjiyintubianzaocheng,fabingqibujinxianyuxinshengerjieduan,ershifugaiquannianlingjieduan。ruobujishizhiliao,duoshuyichuandaixiebinghuiduihuanerdeshengzhangfayuzaochengyanzhongyingxiang。

遗传代谢疾病带来的痛苦

九州体育muqian,zaiwoguomeinian2000duowandechushengrenkouzhong,yueyou40wandao50wandeertonghuanyouyichuandaixiejibing,zonghehuanbinglvgaoda1/40-1/50。benbingtongniaozheng、jiajibingersuan、gexiebing、pangbeibing、nianduotangzhengdengjibingdoushuyuyichuandaixiebing。yichuandaixiejibingbujinjihuanerdailaijudadetongku,yejijiatingheshehuidailailechen

zhongdejingshen、jingjifudan。

遗传代谢病的诊疗与一般疾病有什么不同?

九州体育yichuandaixiebingdezhengzhuangmeiyouteshuxing,yishengtongguoguanchazhengzhuangnanyizhenduan。tongchangxuyaopeiheqitayixuejiance,biruchuanlianzhipujiancedeng。

九州体育yichuandaixiebingdezhiliaoxiaoguohendachengdushangqujueyuzhiliaoshiji。duiyuhenduoyichuandaixiejibingeryan,jizaozhiliaokeyibimianjibingduihuanerdeyingxiang。

如何及早发现遗传代谢疾病从而抓住最佳治疗时机?

ruoxiangjizaofaxianqianzaideyichuandaixiebing,zuiyoudebanfashijijijinxingxinshengerjibingshaicha(chusheng3tianhoucaixueyang)。xinshengerjibingshaichadexiangmutongchangbaokuoliangkuai:

九州体育1. chuantongsixiangshaicha,sixiangzhideshijiancesizhongzuichangjianyichuandaixiejibing——benbingtongniaozheng,xiantianxingjiazhuangxiangongnengjiandizheng,xiantianxingshenshangxianpizhizengshengzheng,putaotang6linsuantuoqingmeiquefazheng(candoubing)。

2. chuanlianzhipushaicha,yicixingshaichajishizhongyichuandaixiejibing,xiangxibingzhongmingchengcanjian“chushengquexian(yichuandaixiebing)jiuzhuxiangmujiuzhubingzhongmingdan”

救助对象

1. 0-18zhousui(han18zhousui)linchuangzhenduandeyichuandaixiebingdehuaner。

九州体育2. jiatingjingjikunnan,nenggoutigongdibaozheng、dishouruzheng、jiandanglikapinkunhuzhengminghuocun(ju)weihuidengkaijudejiatingjingjikunnanzhengming。

3. yiliaofeiyongzifubufenchaoguo2000yuan(han)。

救助病种名单

一、新生儿多种遗传代谢病串联质谱检测出的病种

序号

疾病名称(别名、酶缺陷)

1

yiwusuanxuezheng(yiwusuanniaozheng,yiwuxianfumeiatuoqingmeiquefazheng)

2

wuersuanxuezhengixing(wuersuanniaozheng1xing,wuerxianfumeiatuoqingmeiquefazheng)

3

九州体育3-qiangji-3-jiajiwuersuanniaozheng(3-qiangji-3-jiajiwuerxianfumeialiejiemeiquefazheng)

4

九州体育quansuohuameihechengmeiquefazheng(duozhongsuohuameiquefazheng)

5

shengwusumeiquefazheng(duozhongsuohuameiquefazheng)

6

jiajibingersuanxuezhengmutxing(jiajibingersuanniaozhengmutxing,jiajibingerxianfumeiabianweimeiquefazheng)

7

jiajibingersuanxuezhengcblaxing(jiajibingersuanniaozhengcblaxing,guansuhaiyuanmeiquefazheng)

8

jiajibingersuanxuezhengcblbxing(jiajibingersuanniaozhengcblbxing,guansuxianganzhuanyimeiquefazheng)

9

jiajibingersuanxuezhenghebingtongxingbanguangansuanxuezhengcblcxing(jiajibingersuanniaozhenghebingtongxingbanguangansuanniaozhengcblcxing)

10

3-jiajibadouxianganansuanniaozheng(3-jiajibadouxianfumeiasuohuameiquefazheng)

11

bingsuanxuezheng(bingsuanniaozheng,bingxianfumeiasuohuameiquefazheng)

12

β-tongliujiemeiquefazheng(yixianfumeialiujiemeiquefazheng)

13

九州体育bingersuanniaozheng(bingerxianfumeiatuosuomeiquefazheng)

14

yidingxianganansuanniaozheng(yidingxianjifumeiatuoqingmeiquefazheng)

15

2-jiaji-3-qiangjidingsuanxuezheng(2-jiaji-3-qiangjidingxianfumeiatuoqingmeiquefazheng)

16

3-jiajiwuxiersuanxuezheng(3jiajiwuxierxianfumeiashuijiemeiquefazheng)

17

九州体育yijibingersuanniaozheng(yijibingersuannaobing)

18

zhonglianxianjifumeiatuoqingmeiquefazheng

19

jizhanglianxianjifumeiatuoqingmeiquefazheng

20

九州体育zhanglianqiangxianjifumeiatuoqingmeiquefazheng

21

sanguannengtuandanbaizhiquefazheng

22

yuanfaxingroujianquefazheng(roujianzhuanyundanbaiquefazheng)

23

九州体育duanlianxianjifumei a tuoqingmeiquefazheng

24

wuersuanxuezhengⅱxing(duozhongxianjifumeiatuoqingmeiquefazheng)

25

duanlian-3-qiangxianjifumeiatuoqingmeiquefazheng

26

九州体育zhonglianxianjifumeialiujiemeiquefazheng

27

九州体育roujianzonglvxianzhuanyimeiⅰquefazhengxing

28

roujianzonglvxianzhuanyimeiⅱquefazheng

29

九州体育roujian-xianjiroujianyiweimeiquefazheng

30

gaobenbingansuanxuezheng(benbingtongniaozheng,benbingansuanqianghuameiquefazheng)

31

九州体育gaobenbingansuanxuezheng(siqingshengwudielinghechengmeiquefazheng)

32

gaobenbingansuanxuezheng(erqingdiedinghaiyuanmeiquefazheng)

33

laoansuanxuezhengⅰxing(yanhusuoxianyixianyisuanshuijiemeiquefazheng)

34

laoansuanxuezhengⅱxing(laoansuanzhuananmeiquefazheng)

35

laoansuanbing(4-qiangjibenbingtongsuaneryanghuameiquefazheng)

36

fengtangniaozheng(zhilianɑ-tongsuantuoqingmeiquefazheng)

37

九州体育tongxingbanguangansuanxuezheng1xing(guangliumiβhechengmeiquefazheng)

38

anjiaxianlinsuanhechengmeiⅰquefazheng

39

niaoansuananjiaxianjizhuanyimeiquefazheng

40

guaansuanxuezhengⅰxing(jingansuanhuposuanhechengmeiquefazheng)

41

九州体育guaansuanxuezhengⅱxing(xitelindanbaiquefazheng)

42

jingansuanhuposuanniaozheng(jingansuanhuposuanliejiemeiquefazheng)

43

九州体育jingansuanxuezheng(jingansuanmeiquefazheng)

44

鸟氨酸-d-转氨酶缺乏症

45

gaoniaoansuan-gaoxuean-gaotongxingguaansuanxuezhengzonghezheng

46

gaodanansuanxuezheng(jialiuansuanxiangansanlinsuanguansuxianganzhuanyimeiquefazheng)

47

gaofuansuanxuezheng

48

feitongxinggaoganansuanxuezheng(ganansuantuosuomeiquefazheng)

二、其他遗传代谢病病种(30种)

序号

疾病名称(酶或缺陷)

1

九州体育xiantianxingjiazhuangxianjibing,ru:xiantianxingjiazhuangxiangongnengjiandizheng

2

xiantianxingshenshangxianjibing,ru:xiantianxingshenshangxianpizhizengshengzheng

3

xiantianxingyidaogongnengzhangai,ru:xinshengertangniaobing,1xingtangniaobing

4

九州体育xiantianxingshenxiaoguangongnengbuquan,ru:shenxiaoguansuanzhongdu,shenxingniaobengzheng

5

xiantianxingchuitigongnengbuquan,ru:niaobengzheng

6

rutangjibanrutangdaixiezhangai,ru:banrutangxuezheng

7

九州体育guotangdaixieyichang,ru:guotang1,6erlinsuanmeiquefazheng,guotangbunaishou

8

tangyuanleijibing

9

xiantianxingweishengsudaixieyichang,ru:yajiajisiqingyesuanhaiyuanmeiquefazheng

10

九州体育xiantianxingshuidianjiezhidaixieyichang,ru:dimeixuezheng

11

九州体育anjisuandaixiebing,ru:tongxingbanguangansuanxuezheng2xing,guangansuanniaozheng

12

youjisuandaixiebing,ru:4-qiangdingsuanniaozheng,yanghefuansuanxuezheng

13

xiantianxingzhidaixieyichang,ru:jiazuxinggaoganyousanzhixuezheng,jiazuxinggaodanguchunxuezheng

14

xiantianxinggubing,ru:ruangufayubuquan,dilinxinggouloubing

15

九州体育xiantianxingjinshudaixieyichang,ru:gandouzhuanghebianxing,menkesbing

16

xiantianxingjiroubing,ru:jinxingxingjiyingyangbuliang

17

daixiexingxinjibing

18

daixiexingganbing

19

daixiexingnaobing

20

rongmeitibing,ru:zhanduotangbing,nimanpikebing,gexiebing,fabulibing,zhanzhibing,duozhongliusuanzhimeiquefazheng

21

yichuanxingnaobaizhibing,ru:yiranxingnaobaizhiyingyangbuliang,qiuxingnaobaizhiyingyangbuliang

22

shenjingjieganzhizhujibing

23

xianlitibing

24

shenjingdizhidaixiebing,ru:duobafanyingxingjizhanglibuquan,jisuanquefazonghezheng

25

shenjingpifuzonghezheng,ru:jiejiexingyinghua,zaolaozheng

26

九州体育sesudaixieyichang,ru:baihuabing

27

九州体育xiantianxingxingjisudaixieyichang,ru:luanchaofayubuquan

28

danbaitangjihuayichang

29

tongtishengchengzhangai

30

九州体育guoyanghuawumeitibing,ru:naoganshenzonghezheng(zellwegerbing),shenshangxiannaobaizhiyingyangbuliang

 

资助标准

duihuanerzai2015nian1yue1ri(han)yihouchanshengdezhenliaofeiyongjinxingjiuzhu,yijuzifeiqingkuangzizhubiaozhun(renminbijine)ruxia:

1. zifubufenchaoguo2000yuan(han)、xiaoyu3000yuande,buzhueduwei2000yuan。

2. zifubufenchaoguo3000yuan(han)de,anzifufeiyongde85%yuyibuzhu,zuigaobuzhueduwei10000yuan(han)。

九州体育3. huanerzaihuodediyicibuzhujin(yijijinhuijiuzhushijianweizhun)zhihoukeshenqingdiercibuzhu。

申请材料

1.shenqingbiao:youzhongguochushengquexianganyujiuzhujijinhuishedingdetongyigeshidejiuzhuxiangmushenqingbiao。

九州体育2.hujiziliao:zhengmingjianhurenyuhuanerdeqinziguanxi(1)shenqingrenjianhurenshenfenzhengfuyinjian+shenqingrenjiqijianhurenhukoubufuyinjianhuo(2)chushengyixuezhengming+jianhurenshenfenzhengfuyinjianhuo(3)paichusuokaijudejianhuguanxizhengmingyuanjian+zuixinshenghuozhaopian+jianhurenshenfenzhengfuyinjian。guerxutigongdangdiminzhengjuhuofuliyuanzhengmingyuanjian。

3.jiatingjingjikunnanzhengmingcailiao:dibaozheng、dishouruzheng、jiandanglikapinkunhuzhengmingcailiaofuyinjian,huocun(ju)weihuidengchujudejiatingjingjikunnanzhengmingyuanjian。

九州体育4.bingqingzhengmingcailiao:yiliaojigouchujudehuanerbingqingzhenduanzhengming、zhuyuanjiuzhoutiyujibingli、chuyuanjilu(ruyouzhuyuanzhiliaoqingtigong)、jiyinjiancehuochuanlianzhipujiancebaogao、xueyejiancebaogaodeng。

申请流程

1.dijiaoshenqing:zaihuanerchangzhudidejiuzhuxiangmushishidanweijiuzhuxiangmufuzerenzhidaoxiatijiaoshenqingyijigexiangshenqingcailiao

2.cailiaochushen:youjiuzhuxiangmushishidanweiduishenqingrendegexiangshenqingcailiaojinxingchushen

3.zhuanjiapingshen:tongguochushendeshenqingrenziliaohuitijiaodaojiuzhuxiangmuguanlidanwei,jiaoyou shengjizhuanjiapingweihuijinxingzhuanjiapingshen

4.wangluogongshi:tongguozhuanjiapingshendeshenqingrenziliaohuitijiaodaozhongguochushengquexianganyujiuzhujijinhui,zaijijinhuiguanwangjinxingwangluogongshi

5.tianxiehuizhi+jisongfapiao:wangluogongshiwuyiyihou,shenqingrenjiangshoudaoyoujiuzhoutiyufachudejiuzhuhuizhidan,tianxiehaohuizhidanhoutongyiliaopiaojuyibingjiaojidangdijiuzhuxiangmushishidanwei,youshishidanweijisongdaojiuzhuxiangmuguanlidanwei,jingguanlidanweishenhewuwuhou,jisongdaozhongguochushengquexianganyujiuzhujijinhui。

九州体育6.jiuzhujinfafang:jijinhuiduihuanersuoyouziliaojiyiliaopiaojujinxingshenhequerenwuwuhou,xianghuaneryinxingzhanghubofuxiangyingjiuzhukuanxiang,binggaozhixiangmuguanlidanwei。

beizhu:

九州体育1. yiliaopiaojuyuanjianbixuweiguojiagongliyiliaojigousuokaijudefapiao。

2. fapiaoyuanjianshangyaotongshigaiyoucaizhengbumenjianzhidegongzhanghecaiwubumenshoufeidegongzhang。

3. rufapiaoshangmeiyouxiangxidefeiyongmingxixinxi,yaolingkaijuduiyingfapiaodemingxiqing,mingxiqingdanyaogaizhang。

 

九州体育xiangqingqingzixunjiuzhuxiangmushishidanwei

救助项目实施单位


jiuzhuxiangmushishidanwei

lianxidianhua

fuzhou

九州体育jiuzhoutiyuxinshengerjibingshaichazhongxin(fujianshengjiuzhuxiangmuguanlidanwei)

fuzhou

fuzhoushiertongyiyuan

shamen

shamenshijiuzhoutiyubaojianyuan

zhangzhou

zhangzhoushijiuzhoutiyubaojianyuan

quanzhou

quanzhoushijiuzhoutiyubaojianyuan

sanming

sanmingshijiuzhoutiyubaojianyuan

putian

putianshijiuzhoutiyubaojianyuan

nanping

nanpingshijiuzhoutiyubaojianyuan

longyan

longyanshijiuzhoutiyubaojianyuan

ningde

ningdeshijiuzhoutiyubaojianyuan

 

九州体育beizhu:pingtanzongheshiyanquneifuhejiuzhutiaojianzhekexiangjiuzhoutiyuxinshengerjibingshaichazhongxintichujiuzhushenqing。


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