中国瓷娃娃关怀协会招募平面设计师志愿者

平凡的凡凡

<p class="MsoNormal" style="MARGIN: 0cm 0cm 0pt"><font size="3"><span style="FONT-FAMILY: 宋体; mso-ascii-font-family: 'Times New Roman'; mso-hansi-font-family: 'Times New Roman'">中国瓷娃娃关怀协会</span><span lang="EN-US"><font face="Times New Roman">(China-dolls Care and Support Association)</font></span><span style="FONT-FAMILY: 宋体; mso-ascii-font-family: 'Times New Roman'; mso-hansi-font-family: 'Times New Roman'">成立于</span><span lang="EN-US"><font face="Times New Roman">2007</font></span><span style="FONT-FAMILY: 宋体; mso-ascii-font-family: 'Times New Roman'; mso-hansi-font-family: 'Times New Roman'">年</span><span lang="EN-US"><font face="Times New Roman">5</font></span><span style="FONT-FAMILY: 宋体; mso-ascii-font-family: 'Times New Roman'; mso-hansi-font-family: 'Times New Roman'">月，是由成骨不全症（脆骨病）患者自发成立，于</span><span lang="EN-US"><font face="Times New Roman">2006</font></span><span style="FONT-FAMILY: 宋体; mso-ascii-font-family: 'Times New Roman'; mso-hansi-font-family: 'Times New Roman'">年底即开始通过&quot;玻璃之城&quot;论坛关注和帮助成骨不全患者，本协会是一个从事公益性、非盈利性社会工作的民间组织，致力于促进社会和公众对于成骨不全患者的了解和尊重，消除对于他们的歧视，维护该群体在医疗、教育、就业等领域的平等权益，推动有利于成骨不全等罕见疾病群体的社会保障相关政策出台。</span></font></p>
<p class="MsoNormal" style="MARGIN: 0cm 0cm 0pt"><font size="3"><span style="FONT-FAMILY: 宋体; mso-ascii-font-family: 'Times New Roman'; mso-hansi-font-family: 'Times New Roman'">瓷娃娃，寓意成骨不全患者犹如瓷器做的洋娃娃一样可爱、而又易碎，符合患者的外貌和容易骨折的特征，同时英文&quot;</span><span lang="EN-US"><font face="Times New Roman">China-dolls</font></span><span style="FONT-FAMILY: 宋体; mso-ascii-font-family: 'Times New Roman'; mso-hansi-font-family: 'Times New Roman'">&quot;又赋予了&quot;中国&quot;和&quot;瓷器&quot;的双重含义，象征成骨不全患者是中国公民中的重要一部分。</span></font></p>
<p class="MsoNormal" style="MARGIN: 0cm 0cm 0pt"><span style="FONT-FAMILY: 宋体; mso-ascii-font-family: 'Times New Roman'; mso-hansi-font-family: 'Times New Roman'"><font size="3">我们以建立成骨不全等罕见疾病群体获得尊重、平等的社会环境为工作宗旨，为了能够让我们的工作更快更好的开展，现公开招募平面设计师志愿者：</font></span></p>
<p class="MsoNormal" style="MARGIN: 0cm 0cm 0pt"><span lang="EN-US"><font size="3"><font face="Times New Roman"><span style="mso-tab-count: 1">&nbsp;&nbsp;&nbsp; </span></font></font></span></p>
<p class="MsoNormal" style="MARGIN: 0cm 0cm 0pt"><font size="3"><span lang="EN-US"><font face="Times New Roman"><span style="mso-tab-count: 1">&nbsp;&nbsp;&nbsp; </span></font></span><span style="FONT-FAMILY: 宋体; mso-ascii-font-family: 'Times New Roman'; mso-hansi-font-family: 'Times New Roman'">平面设计师</span></font></p>
<p class="MsoNormal" style="MARGIN: 0cm 0cm 0pt"><font size="3"><span style="FONT-FAMILY: 宋体; mso-ascii-font-family: 'Times New Roman'; mso-hansi-font-family: 'Times New Roman'">要求：</span><span lang="EN-US"><font face="Times New Roman">1</font></span><span style="FONT-FAMILY: 宋体; mso-ascii-font-family: 'Times New Roman'; mso-hansi-font-family: 'Times New Roman'">、认可本机构的工作理念，对机构的目标人群持有平等和尊重的态度；</span></font></p>
<p class="MsoNormal" style="MARGIN: 0cm 0cm 0pt"><font size="3"><span lang="EN-US"><font face="Times New Roman"><span style="mso-spacerun: yes">&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; </span>2</font></span><span style="FONT-FAMILY: 宋体; mso-ascii-font-family: 'Times New Roman'; mso-hansi-font-family: 'Times New Roman'">、具有志愿精神，能够利用空闲时间支持本机构的工作；</span></font></p>
<p class="MsoNormal" style="MARGIN: 0cm 0cm 0pt"><font size="3"><span lang="EN-US"><font face="Times New Roman"><span style="mso-spacerun: yes">&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; </span>3</font></span><span style="FONT-FAMILY: 宋体; mso-ascii-font-family: 'Times New Roman'; mso-hansi-font-family: 'Times New Roman'">、在平面设计方面具有丰富的经验，熟练掌握设计软件；</span></font></p>
<p class="MsoNormal" style="MARGIN: 0cm 0cm 0pt; TEXT-INDENT: 31.5pt; mso-char-indent-count: 3.0"><font size="3"><span lang="EN-US"><font face="Times New Roman">4</font></span><span style="FONT-FAMILY: 宋体; mso-ascii-font-family: 'Times New Roman'; mso-hansi-font-family: 'Times New Roman'">、每月有</span><span lang="EN-US"><font face="Times New Roman">5</font></span><span style="FONT-FAMILY: 宋体; mso-ascii-font-family: 'Times New Roman'; mso-hansi-font-family: 'Times New Roman'">&mdash;</span><span lang="EN-US"><font face="Times New Roman">10</font></span><span style="FONT-FAMILY: 宋体; mso-ascii-font-family: 'Times New Roman'; mso-hansi-font-family: 'Times New Roman'">个小时参与志愿工作</span></font></p>
<p class="MsoNormal" style="MARGIN: 0cm 0cm 0pt"><span lang="EN-US"><font face="Times New Roman" size="3">&nbsp;</font></span></p>
<p class="MsoNormal" style="MARGIN: 0cm 0cm 0pt"><font size="3"><span style="FONT-FAMILY: 宋体; mso-ascii-font-family: 'Times New Roman'; mso-hansi-font-family: 'Times New Roman'">职责：</span><span lang="EN-US"><font face="Times New Roman">1</font></span><span style="FONT-FAMILY: 宋体; mso-ascii-font-family: 'Times New Roman'; mso-hansi-font-family: 'Times New Roman'">、负责机构设计各类印刷品，包括杂志、海报、明信片、宣传页等</span></font></p>
<p class="MsoNormal" style="MARGIN: 0cm 0cm 0pt"><span lang="EN-US"><span style="mso-spacerun: yes"><font face="Times New Roman" size="3">&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; </font></span></span></p>
<p class="MsoNormal" style="MARGIN: 0cm 0cm 0pt"><span lang="EN-US"><font face="Times New Roman" size="3">&nbsp;</font></span></p>
<p class="MsoNormal" style="MARGIN: 0cm 0cm 0pt"><span style="FONT-FAMILY: 宋体; mso-ascii-font-family: 'Times New Roman'; mso-hansi-font-family: 'Times New Roman'"><font size="3">其他说明：</font></span></p>
<p class="MsoNormal" style="MARGIN: 0cm 0cm 0pt"><font size="3"><span lang="EN-US"><font face="Times New Roman">1</font></span><span style="FONT-FAMILY: 宋体; mso-ascii-font-family: 'Times New Roman'; mso-hansi-font-family: 'Times New Roman'">、完整填写申请表，并附上</span><span lang="EN-US"><font face="Times New Roman">2</font></span><span style="FONT-FAMILY: 宋体; mso-ascii-font-family: 'Times New Roman'; mso-hansi-font-family: 'Times New Roman'">个设计作品；</span></font></p>
<p class="MsoNormal" style="MARGIN: 0cm 0cm 0pt"><font size="3"><span lang="EN-US"><font face="Times New Roman">2</font></span><span style="FONT-FAMILY: 宋体; mso-ascii-font-family: 'Times New Roman'; mso-hansi-font-family: 'Times New Roman'">、以上职务所需人数为</span><span lang="EN-US"><font face="Times New Roman">3</font></span><span style="FONT-FAMILY: 宋体; mso-ascii-font-family: 'Times New Roman'; mso-hansi-font-family: 'Times New Roman'">&mdash;</span><span lang="EN-US"><font face="Times New Roman">5</font></span><span style="FONT-FAMILY: 宋体; mso-ascii-font-family: 'Times New Roman'; mso-hansi-font-family: 'Times New Roman'">人，组建一个设计团队；</span></font></p>
<p class="MsoNormal" style="MARGIN: 0cm 0cm 0pt"><font size="3"><span lang="EN-US"><font face="Times New Roman">3</font></span><span style="FONT-FAMILY: 宋体; mso-ascii-font-family: 'Times New Roman'; mso-hansi-font-family: 'Times New Roman'">、工作方式均为通过网络完成，地区不限，最好在北京。</span></font></p>
<p class="MsoNormal" style="MARGIN: 0cm 0cm 0pt"><span lang="EN-US"><font face="Times New Roman" size="3">&nbsp;</font></span></p>
<p class="MsoNormal" style="MARGIN: 0cm 0cm 0pt"><span style="FONT-FAMILY: 宋体; mso-ascii-font-family: 'Times New Roman'; mso-hansi-font-family: 'Times New Roman'"><font size="3">所有加入我们的志愿者可以：</font></span></p>
<p class="MsoNormal" style="MARGIN: 0cm 0cm 0pt"><font size="3"><span lang="EN-US"><font face="Times New Roman">1</font></span><span style="FONT-FAMILY: 宋体; mso-ascii-font-family: 'Times New Roman'; mso-hansi-font-family: 'Times New Roman'">、</span><span lang="EN-US"><span style="mso-tab-count: 1"><font face="Times New Roman">&nbsp; </font></span></span><span style="FONT-FAMILY: 宋体; mso-ascii-font-family: 'Times New Roman'; mso-hansi-font-family: 'Times New Roman'">为中国的公益事业奉献自己的力量，做一件很有意义的事情</span></font></p>
<p class="MsoNormal" style="MARGIN: 0cm 0cm 0pt"><font size="3"><span lang="EN-US"><font face="Times New Roman">2</font></span><span style="FONT-FAMILY: 宋体; mso-ascii-font-family: 'Times New Roman'; mso-hansi-font-family: 'Times New Roman'">、</span><span lang="EN-US"><span style="mso-tab-count: 1"><font face="Times New Roman">&nbsp; </font></span></span><span style="FONT-FAMILY: 宋体; mso-ascii-font-family: 'Times New Roman'; mso-hansi-font-family: 'Times New Roman'">为志愿者（北京地区）组织</span><span lang="EN-US"><font face="Times New Roman">1</font></span><span style="FONT-FAMILY: 宋体; mso-ascii-font-family: 'Times New Roman'; mso-hansi-font-family: 'Times New Roman'">次成骨不全疾病知识的培训以及志愿者培训</span></font></p>
<p class="MsoNormal" style="MARGIN: 0cm 0cm 0pt"><font size="3"><span lang="EN-US"><font face="Times New Roman">3</font></span><span style="FONT-FAMILY: 宋体; mso-ascii-font-family: 'Times New Roman'; mso-hansi-font-family: 'Times New Roman'">、</span><span lang="EN-US"><span style="mso-tab-count: 1"><font face="Times New Roman">&nbsp; </font></span></span><span style="FONT-FAMILY: 宋体; mso-ascii-font-family: 'Times New Roman'; mso-hansi-font-family: 'Times New Roman'">参与机构举办的各种活动，比如电影沙龙、志愿者例会</span></font></p>
<p class="MsoNormal" style="MARGIN: 0cm 0cm 0pt"><font size="3"><span lang="EN-US"><font face="Times New Roman">4</font></span><span style="FONT-FAMILY: 宋体; mso-ascii-font-family: 'Times New Roman'; mso-hansi-font-family: 'Times New Roman'">、</span><span lang="EN-US"><span style="mso-tab-count: 1"><font face="Times New Roman">&nbsp; </font></span></span><span style="FONT-FAMILY: 宋体; mso-ascii-font-family: 'Times New Roman'; mso-hansi-font-family: 'Times New Roman'">获得志愿精神带来的快乐和成长</span></font></p>
<p class="MsoNormal" style="MARGIN: 0cm 0cm 0pt"><font size="3"><span lang="EN-US"><font face="Times New Roman">5</font></span><span style="FONT-FAMILY: 宋体; mso-ascii-font-family: 'Times New Roman'; mso-hansi-font-family: 'Times New Roman'">、</span><span lang="EN-US"><span style="mso-tab-count: 1"><font face="Times New Roman">&nbsp; </font></span></span><span style="FONT-FAMILY: 宋体; mso-ascii-font-family: 'Times New Roman'; mso-hansi-font-family: 'Times New Roman'">可以结交更多的志同道合的朋友</span></font></p>
<p class="MsoNormal" style="MARGIN: 0cm 0cm 0pt"><span lang="EN-US"><font face="Times New Roman" size="3">&nbsp;</font></span></p>
<p class="MsoNormal" style="MARGIN: 0cm 0cm 0pt"><font size="3"><span style="FONT-FAMILY: 宋体; mso-ascii-font-family: 'Times New Roman'; mso-hansi-font-family: 'Times New Roman'">应聘截止日期</span><span lang="EN-US"><font face="Times New Roman">10</font></span><span style="FONT-FAMILY: 宋体; mso-ascii-font-family: 'Times New Roman'; mso-hansi-font-family: 'Times New Roman'">月</span><span lang="EN-US"><font face="Times New Roman">30</font></span><span style="FONT-FAMILY: 宋体; mso-ascii-font-family: 'Times New Roman'; mso-hansi-font-family: 'Times New Roman'">日，有任何问题。</span></font></p>
<p class="MsoNormal" style="MARGIN: 0cm 0cm 0pt"><font size="3"><span style="FONT-FAMILY: 宋体; mso-ascii-font-family: 'Times New Roman'; mso-hansi-font-family: 'Times New Roman'">请发邮件到：</span><span lang="EN-US"><font face="Times New Roman"><a href="mailto:chinadollscn@gmail.com" target="_blank">chinadollscn@gmail.com</a> </font></span><span style="FONT-FAMILY: 宋体; mso-ascii-font-family: 'Times New Roman'; mso-hansi-font-family: 'Times New Roman'">和</span><span lang="EN-US"><font face="Times New Roman"><a href="mailto:kevinhuang06@gmail.com" target="_blank">kevinhuang06@gmail.com</a></font></span></font></p>
<p class="MsoNormal" style="MARGIN: 0cm 0cm 0pt"><span lang="EN-US"><font face="Times New Roman" size="3">&nbsp;</font></span></p>
<p class="MsoNormal" style="MARGIN: 0cm 0cm 0pt"><span style="FONT-FAMILY: 宋体; mso-ascii-font-family: 'Times New Roman'; mso-hansi-font-family: 'Times New Roman'"><font size="3">中国瓷娃娃关怀协会</font></span></p>
<p class="MsoNormal" style="MARGIN: 0cm 0cm 0pt"><span lang="EN-US"><font face="Times New Roman" size="3"><a href="http://www.chinadolls.org.cn/" target="_blank">www.chinadolls.org.cn</a></font></span></p>
<p class="MsoNormal" style="MARGIN: 0cm 0cm 0pt"><span lang="EN-US"><font face="Times New Roman" size="3">2008-10-2</font></span></p>
<p class="MsoNormal" style="MARGIN: 0cm 0cm 0pt"><span lang="EN-US"><font face="Times New Roman" size="3">&nbsp;</font></span></p>
<p class="MsoNormal" style="MARGIN: 0cm 0cm 0pt"><span style="FONT-FAMILY: 宋体; mso-ascii-font-family: 'Times New Roman'; mso-hansi-font-family: 'Times New Roman'"><font size="3">请朋友们广为转发。</font></span></p>

平凡的凡凡

疾病简介：

成骨不全症(osteogenesis imperfecta, OI)是以骨脆弱和骨畸形为临床特征的常染色体显性或隐性遗传缺陷的结缔组织病，又称脆骨症、原发性骨脆症及玻璃娃娃等，具有遗传性。全人类各种族内男女均有发病，总发病率约为1/10，000—1/15，000，全球估计共有500万名OI患者，目前中国没有任何研究数据，按照以上的比例，估计目前应该有10万人左右。

疾病的表现通常为巩膜通常呈现蓝色、紫色或灰色；在母亲子宫内即并发多处骨折；进行性骨变形，长骨短且弯曲，造成身材极度矮小；脊柱倾向弯曲，牙齿硬而易脆等症状。

在近几年中国各地媒体的报道中频繁出现此病人的相关报道，并引起很多人的关注，但是社会的关注并没有改变该群体的生活状况。目前，政府和民间机构都还没有对这一个人群提供基本的援助。大部分成骨不全症患者的家庭生活极其困苦，患者医疗费用负担沉重，政府缺乏对该疾病的政策支持，社会救助欠缺，药品依赖进口以及国产药品副作用大，教育歧视和排斥现象非常严重，患者在治疗、教育、就业和关怀方面的合法权益难以得到保障。