各国神经纤维瘤Ⅰ型疾病的福利措施和社会救助组织

Welfare measures and social relief organizations for NF1 in various countries

目的梳理国外神经纤维瘤1型(neurofibromatosis type 1,NF1)疾病的福利照顾政策和相关社会救助组织,为我国NF1疾病患者相关福利政策的制定提供参考。方法对国外NF1疾病相关福利政策的文献、法规进行收集、翻译、整理和分析,同时对国内外NF1疾病救助组织进行介绍。结果美国、日本、澳大利亚和英国对于NF1疾病有较为明确的福利措施,美国、日本、澳大利亚、法国、英国和新西兰均有NF1疾病相关社会救助组织。结论国外NF1疾病福利政策相对来说较为完善,对我国政策的制定有一定的参考意义,但我们应该充分考虑本国国情,结合国外政策体系的思路,提高我国NF1疾病的医疗服务水平,提升NF1疾病患者的生命质量。

Objective To study the welfare policies and related social relife organizations of NF1 in foreign countries so as to provide reference for the formulation of welfare policies for patients with neurofibromatosis type 1(NF1)in China.Methods The foreign literatures and regulations related to NF1 on welfare policies were collected,translated,and analyzed.Meanwhile,the NF1 related social relief organizations at home and abroad were introduced.Results There are clear welfare measures for NF1 in the USA,Japan,Australia and the UK.Besides,there are NF1 related social relief organizations in the USA,Japan,Australia,France,the UK and New Zealand.Conclusion The foreign NF1 welfare policies which have certain reference for China′s policy formulation are relatively perfect.However,we should fully consider our national conditions and combine the foreign policy systems to improve the medical service level of NF1 and the quality of life of patients in China.