佛山市罕见病医疗救助政策 2023健康佛医保对121种罕见病报销多少


2023健康佛医保对121种罕见病报销多少?
参保人投保年度内(无等待期) , 经二级及以上医院初次确诊121种罕见病的,一次性给付1万元罕见病保险金 , 对该参保人该项保险责任终止 。
赔付比例:100% 。
保障额度:10000元 。
保障范围:
详见《关于公布第一批罕见病目录的通知》国卫医发〔2018〕10号,如下所示
第一批罕见病目录
序号 中文名称 英文名称 121-羟化酶缺乏症21-Hydroxyulase Deficiency2白化病Albinism3Alport 综合征Alport Syndrome4肌萎缩侧索硬化Amyotrophic Lateral Sclerosis5Angelman 氏症候群(天使综合征)Angelman Syndrome6精氨酸酶缺乏症Arginase Deficiency7热纳综合征(窒息性胸腔失养症)Asphyxiating Thoracic Dystrophy(Jeune Syndrome)8非典型溶血性尿毒症Atypical Hemolytic Uremic Syndrome9自身免疫性脑炎Autoimmune Encephalitis10自身免疫性垂体炎Autoimmune Hypophysitis11自身免疫性胰岛素受体病Autoimmune Insulin Receptopathy(Type B insulin resistance)12β-酮硫解酶缺乏症Beta-ketothiolase Deficiency13生物素酶缺乏症Biotinidase Deficiency14心脏离子通道病Cardic Ion Channelopathies15原发性肉碱缺乏症Carnitine Deficiency16Castleman病Castleman Disease17腓骨肌萎缩症Charcot-Marie-Tooth Disease18瓜氨酸血症Citrullinemia19先天性肾上腺发育不良Congenital Adrenal Hypoplasia20先天性高胰岛素性低血糖血症Congenital Hyperinsulinemic Hypoglycemia21先天性肌无力综合征Congenital Myasthenic Syndrome22先天性肌强直(非营养不良性肌强直综合征)Congenital Myotonia Syndrome(Non-Dystrophic Myotonia, NDM)23先天性脊柱侧弯Congenital Scoliosis24冠状动脉扩张病Coronary Artery Ectasia25先天性纯红细胞再生障碍性贫血Diamond-Blackfan Anemia26Erdheim-Chester病Erdheim-Chester Disease27法布雷病Fabry Disease28家族性地中海热Familial Mediterranean Fever29范可尼贫血Fanconi Anemia30半乳糖血症Galactosemia31戈谢病Gaucher's Disease32全身型重症肌无力General Myathenic Gravis33Gitelman 综合征Gitelman Syndrome34戊二酸血症I型Glutaric Acidemia Type I35糖原累积?。↖型、Ⅱ型)Glycogen Storage Disease(Type I、II)36血友病Hemophilia37肝豆状核变性Hepatolenticular Degeneration(Wilson Disease)38遗传性血管性水肿Hereditary Angioedema (HAE)39遗传性大疱性表皮松解症Hereditary Epidermolysis Bullosa40遗传性果糖不耐受症Hereditary Fructose Intolerance41遗传性低镁血症Hereditary Hypomagnesemia42遗传性多发脑梗死性痴呆Hereditary Multi-infarct Dementia(Cerebral Autosomal Dominant Arteriopathy with Subcortical Infarcts and Leukoencephalopathy, CADASIL)43遗传性痉挛性截瘫Hereditary Spastic Paraplegia44全羧化酶合成酶缺乏症Holocarboxylase Synthetase Deficiency45同型半胱氨酸血症Homocysteinemia46纯合子家族性高胆固醇血症Homozygous Hypercholesterolemia47亨廷顿舞蹈病Huntington Disease48HHH综合征Hyperornithinaemia-Hyperammonaemia-Hhomocitrullinuria Syndrome49高苯丙氨酸血症Hyperphenylalaninemia50低碱性磷酸酶血症Hypophosphatasia51低磷性佝偻病Hypophosphatemic Rickets52特发性心肌病Idiopathic Cardiomyopathy53特发性低促性腺激素性性腺功能减退症Idiopathic Hypogonadotropic Hypogonadism54特发性肺动脉高压Idiopathic Pulmonary Arterial Hypertension55特发性肺纤维化Idiopathic Pulmonary Fibrosis56IgG4相关性疾病IgG4 related Disease57先天性胆汁酸合成障碍Inborn Errors of Bile Acid Synthesis58异戊酸血症Isovaleric Acidemia59卡尔曼综合征Kallmann Syndrome60朗格汉斯组织细胞增生症Langerhans Cell Histiocytosis61莱伦氏综合征Laron Syndrome62Leber遗传性视神经病变Leber Hereditary Optic Neuropathy63长链3-羟酰基辅酶A脱氢酶缺乏症Long Chain 3-hydroxyacyl-CoA Dehydrogenase Deficiency64淋巴管肌瘤病Lymphangioleiomyomatosis (LAM)65赖氨酸尿蛋白不耐受症Lysine Urinary Protein Intolerance66溶酶体酸性脂肪酶缺乏症Lysosomal Acid Lipase Deficiency67枫糖尿症Maple Syrup Urine Disease68马凡综合征Marfan Syndrome69McCune-Albrigh综合征McCune-Albright Syndrome70中链酰基辅酶A脱氢酶缺乏症Medium Chain Acyl-CoA Dehydrogenase Deficiency71甲基丙二酸血症Methylmalonic Academia72线粒体脑肌病Mitochodrial Encephalomyopathy73黏多糖贮积症Mucopolysaccharidosis74多灶性运动神经病Multi-Focal Motor Neurothy75多种酰基辅酶A脱氢酶缺乏症Multiple Acyl-CoA Dehydrogenase Deficiency76多发性硬化Multiple Sclerosis77多系统萎缩Multiple System Atrophy78肌强直性营养不良Myotonic Dystrophy79N-乙酰谷氨酸合成酶缺乏症NAGS Deficiency80新生儿糖尿病Neonatal Diabetes Mellitus81视神经脊髓炎Neuromyelitis Optica82尼曼匹克病Niemann-Pick Disease83非综合征性耳聋Non-Syndromic Deafness84Noonan综合征Noonan Syndrome85鸟氨酸氨甲酰基转移酶缺乏症Ornithine Transcarbamylase Deficiency86成骨不全症(脆骨?。?/td>Osteogenesis Imperfecta(Brittle Bone Disease)87帕金森?。ㄇ嗄晷汀⒃绶⑿停?/td>Parkinson Disease (Young-onset , Early-onset)88阵发性睡眠性血红蛋白尿Paroxysmal Nocturnal Hemoglobinuia89黑斑息肉综合征Peutz-Jeghers Syndrome90苯丙酮尿症Phenylketouria91POEMS综合征POEMS Syndrome92卟啉病Porphyria93Prader-Willi综合征Prader-Willi Syndrome94原发性联合免疫缺陷Primary Combined Immune Deficiency95原发性遗传性肌张力不全Primary Hereditary Dystonia96原发性轻链型淀粉样变Primary Light Chain Amyloidosis97进行性家族性肝内胆汁淤积症Progressive Familial Intrahepatic Cholestasis98进行性肌营养不良Progressive Muscular Dystrophyies99丙酸血症Propionic Acidemia100肺泡蛋白沉积症Pulmonary Alveolar Proteinosis101肺囊性纤维化Pulmonary Cystic Fibrosis102视网膜色素变性症Retinitis Pigmentosa103视网膜母细胞瘤Retinoblastoma104重症先天性粒细胞缺乏症Severe Congenital Neutropenia105婴儿严重肌阵挛性癫痫(Dravet综合征)Severe Myoclonic Epilepsy In Infaricy(Dravet Syndrome)106镰刀型细胞贫血病Sickle Cell Disease107Silver-Russell综合征Silver-Russell Syndrome108谷固醇血症Sitosterolemia109脊髓延髓肌萎缩症(肯尼迪?。?/td>Spinal and Bulbar Muscular Atrophy(Kennedy Disease)110脊髓性肌萎缩症Spinal Muscular Atrophy111脊髓小脑性共济失调Spinocerebellar Ataxia112系统性硬化症Systemic Sclerosis113四氢生物蝶呤缺乏症Tetrahydrobiopterin Deficiency114结节性硬化症Tuberous Sclerosis Complex115原发性酪氨酸血症Tyrosinemia116极长链酰基辅酶A脱氢酶缺乏症Very Long Chain Acyl-CoA Dehydrogenase Deficiency117威廉姆斯综合征Williams Syndrome118湿疹血小板减少伴免疫缺陷综合征Wiskott-Aldrich Syndrome119X-连锁无丙种球蛋白血症X-linked Agammaglobulinemia120X-连锁肾上腺脑白质营养不良X-linked Ldrenoleuko Dystrophy121X-连锁淋巴增生症X-linked Lymphoproliferative Disease


【佛山市罕见病医疗救助政策 2023健康佛医保对121种罕见病报销多少】