(图文)《中国罕见病》第4期
《中国罕见病》第4期 2011.03
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目录
INFO 资讯
P4 资讯·活动 Info·News
P8 资讯·医疗 Info·Treatment
FOCUS 本期关注
P12 李定国:罕见病立法不能再拖了
LI, Dingguo: Rare Diseases Legislation Cannot Wait
P15 黄尚志:面对罕见病,人人都有责任
HUANG, Shangzhi: Everyone Has Responsibility to Fight with the Rare Disorders
P22 黄昱:罕见病患者不是社会的负担
HUANG, Yu: Rare Diseases Are Not the Burden of Society
P23 夏红:罕见病纳入医保,上海欲先行一步
XIA, Hong: Rare Diseases Covered by Medical Security, Shanghai is Willing to Go First
P24 罕见病政策倡导中病人组织的作用
The Role of Patient Organizations in Rare Disease Policy Advocacy
P26 曾敏杰:对大陆罕见病议题发展的观察
ZENG,Minjie:The Observations About the Development of Rare Diseases Issues in Mainland China
PATIENT ORG 机构介绍
P27 重庆市血友病康复协会
Haemophilia Association of Chongqing
ACTION 机构行动
P28 从爱心贺卡到新春大礼包
From China-Dolls Greeting Card to Chinese New Yeat Gift Package
P30 中国血友之家举办2011年领导能力建设培训会
Haemophilia Home of China Hosts The 2011 Leadership Ability Construction Training
SALON 心灵有约
P32 爱的接力赛
Relay of Love
P34 最寒冷的冬天
The Coldest Winter
P35 活着,有什么理由放弃
Living, No Reason to Give Up
P36 我的2010
My Life in 2010
ACCESSIBLE 有爱无障碍
P38 勇敢出行第一步
Take the First Step Bravely
SERIAL 连载
P40 与特殊儿童相处(连载四)
Raising Special Children (Serial 4)
INSET 中插
2011国际罕见病日
Rare Disease Day 2011
刘恩发:翰墨丹青
LIU, Enfa: Chinese Ink and Wash Painting
INSIDE FRONT COVER 封二
还好,我们的爱不脆弱
Love is still strong
INSIDE BACK COVER 封三
《中国罕见病》征稿启事
Rare Disease in China Call for Papers