瓷娃娃关怀协会

瓷娃娃关怀协会成在束推响思妒立于2007年5月，由成骨不全症(脆来自骨病)患者自发成立，2008年1刑绍林苏苏1月正式在北京注册。本协会是一个从事公益性、非盈利性社会工作的民间组织。

致角检沙致查力于促进社会和公众对于成骨不全症等其他罕见疾病患者的了解和尊重，消除对于他们的歧该左积措附深领短视，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用占研另斗创症等罕见疾病脆弱群体的社会保障相关政策出台。目前，大部分成骨不全症患者的家庭生活极其困苦，许多家庭无法负担病症患者的骨折手术和矫正手术的费用，成骨不全症儿童的教育受歧视和排斥现象同样严重。

• 公司名称 瓷娃娃关怀协会
• 总部地点 北京
• 成立时间 2007年5月
• 公司性质 公益性、非盈利性民间组织
• 公司口号 还好，我们的爱不脆弱。

宗旨

　　建立成骨不全症等罕见疾病群体获得尊重、平等的社会环境。

　　Mission: To create a better environment for OI and other rare disease patients, to build a society

　　based on mutual understanding and equality.

口号

　　还好，我们的爱不脆弱。​

　　Our Motto : Love is still strong.

寓意

　　瓷娃娃，寓意成骨不全症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"China-dolls"又赋予了当超界"中国"和"瓷器"的双重含义，象征成骨不全症患者等脆弱群体是中国公民中的重要一部分。

　　"China-Dolls Association" : meaning of the name

　　The name "China-Dolls" reflects the c来自haracteristics of OI patients---vulnerable.

　　They could be compared to porcelain dolls: they are so 360百科lovely but their bones are fragile and easily

　　breaka宽课坚叶按扬积听ble.

　　Meanwhile, the word "Chi劳na" in English both refers to "porcelain" and to a specific "nation" in the

　　world.

　　The message the Association wants t再曲煤友o convey is th粉队括然元应at OI and other rare disease patients are an

　　important 非席part of Chinese society.

目标

　　1、开展成骨不全症等罕见疾病知识宣传教育

　　2、开展疾病群体及者统将成省站面族附掌江家庭的救助工作

　　3、倡导社会对罕见疾病群体的关爱

　　4、推动患者医疗、教育、就业的可及性

　　5、建立罕见疾病患者和家属的交流、互助网络

　　6、为患者及其家庭提供法律援助

　　7、开展罕见疾病及人群的调查和研究

　　8、推动政府在罕见疾病领域的政策出台

　　Objectives:

　　1. To increase knowledge about OI and other rare diseases

　　2. To dev季拿领好elop "Aid & Suppor附移银单六章圆正精责t" programs for the patients and their families

　　3. To raise soci该顾合盾立吃过音旧al awareness of rare diseases

　　4. To improve the access of patients to medical treatment, education and employment

　　5. To build a social self-help network connecting patients and their families

　　6. To prov农供评田金必ide legal aid to 殖然计引背渐维讨茶the patients and their families

　　7. To implement Investigation&Resea亮航挥他务读案宪的旧省rch

　　8. To advocate policy support for rare di模节它扬代调动织利sease pati课兰球言李ents

项目介绍

　　综合信息Info & Advice

　　为病人提供综合信息是协会最基本的工作，通过瓷娃序半娃热线、网站、论坛、QQ群、期刊等形式，与医学专家联合向病人群体提供医疗咨询、心理支持、接收处理求助信息等，并形成良好的病人互助网络。直接覆盖全国各地近500个脆骨病家庭。

　　The main task of the Association is to create an integrated information pl犯马吸延界把松丝尽atform for all the patients

　　through hotlines, websites, for清并并再福ums, QQ groups and newsletters.

　　Thanks to the cooperation of medical experts, the Association offers Medical Consulting,

　　Psychosocial Support and Information & Advice services.

　　Almost 500 patient's families all over the country can now enjoy the benefits of this mutual-assistance network.

　　公众宣教Education

　　公众对于成骨不全等罕见病群体缺乏了解，罕见病知识的宣传教育变得非常重要，本协会通过高校及社区宣讲、瓷娃娃画展、义卖、讲座、媒体参与等形式广泛普及疾病知识及群体状况，累计开展20余场活动，发放资料近万份。

　　The Association relies on the support of media organizations and College & University communities in

　　order to raise the social awareness of OI and to develop a deeper understanding of rare diseases among the common people.

　　In order to increase the knowledge about these phenomena in the civil society, the Association

　　promoted exhibitions, charity bazaars and lectures, arranged more than 20 kinds of activities,

　　collected and provided almost 10.000 data.

　　《瓷娃娃》期刊<CHINADOLLS>Newsletter

　　这是一份面向成骨不全患者及家庭的综合性期刊，主要内容涉及医疗、护理和关怀，病人及家庭的交流、教育、法律以及就业保障等相关信息，是一份能真实反应成骨不全群体声音以及为成骨不全群体提供信息交流的民间刊物。每一期都免费邮寄给病人、家属、公益组织、医生等相关组织和个人。每期印刷500本，且在各大网站发布PDF版本供更多人阅读和下载。

　　This newsletter is aimed at all the OI patients and their families.

　　Its content mainly involves medical treatment, nursing and assistance.

　　The newsletter provides useful information concerning education, information exchange, legal issues

　　and employment security, working as a "spokesman" for all the OI patients.

　　Each edition (500 copies printed) can be sent by post to patients, families, welfare organizations,

　　doctors and individuals for free.

　　一对一资助One Help One(OHO)

　　这是一个针对贫困家庭脆骨病儿童开展的救助项目，协会为贫困家庭找到一个爱心人士结成对子，资助额度为每月100-200元不等，主要用于改善受助儿童的生活、教育环境，该项目的特点是长期性、小额性，捐助款由资助方直接发放给受助家庭，大大增加了透明度和可信度，已经资助了12个家庭。

　　This Aid Project is aimed at improving the living conditions of OI children living in poor families.

　　Every noble-minded man can "adopt" one poor family supplying financial support.

　　The amount ranges from 100 to 200 yuan per month and will be used to improve the living conditions of

　　OI children and their education. This project is a longterm one and the amount to pay is not high.

　　In order to ensure maximum transparency and reliability, donation funds will pass from the good-hearted man's hands directly into the hands of the poor family.

　　At present, 12 families are already enjoying the benefits of "One Help One" financial support

　　project.

　　星期八电影公社Film salon on csday

　　星期八电影公社是一个以播放反映社会问题的影片来达到向公众传播公民社会理念，促使公众对疾病弱势群体以及社会问题的思考，也通过这种定期的活动为参与者提供一个信息交流和经验分享的平台。在雕刻时光咖啡馆(北航店)每两周周日举办一期，累计超过500人参与。

　　The movies broadcasted at Xingqiba Film Salon mainly reflect social problems.

　　The purpose is to let common people understand the real meaning of a concept called "civil society"

　　and to raise the awareness of social problems (including rare diseases).

　　The Film Salon is a valid platform for sharing experiences and information.

　　More than 500 people happily joined this activity which takes place every other Sunday at

　　"Sculpting In Time Café" (Bei Hang Branch).

　　手工坊Handworkshop

　　这是一个通过制作手工产品来为瓷娃娃筹款的项目，举办不定期的手工坊，所有手工作品都将被用于公益义卖，所得款项主要用于瓷娃娃的教育和医疗救助。每期都请资深手工老师来教授手艺，让参与者在快乐学手艺的同时奉献了爱心!

　　The aim of this project is to raise money for "China-Dolls Association" through manufacturing handwork products.

　　This activity is promoted by the handworkshop at unscheduled time and all the products will be

　　shown and sold in charity bazaars.

　　The income will be used to provide medical treatment and education for China-Dolls.

　　Every time a senior handicraft teacher invited by the Association will give handwork

　　lessons: it's a good chance for the participants to learn more about this subject while giving

　　mutual support and loving care to each other.

　　政策法律Policy & Legal

　　由于目前国内还没有相应的政策法律来保障罕见病群体的权益，缺乏有效的医疗保障和社会救助，患者的教育、就业歧视现象非常严重，瓷娃娃协会积极开展在医疗、教育、就业方面的法律咨询、法律援助、公益诉讼，联合其他罕见病组织开展政策倡导，呼吁政府尽快出台罕见病政策。本协会已经通过与学校协调、召开法律研讨会、两会提案、政策倡导、媒体参与等形式开展了大量工作。

　　Up to now, no relevant policies have been promulgated in order to safeguard the equal rights for

　　patients suffering from rare diseases.

　　Since medical treatment benefits and social assistance services are still lacking, these patients

　　must face discrimination and prejudices in the spheres of education and employment.

　　For this reason, ChinaDolls Association promoted consulting services, legal aid and public interest

　　lawsuits concerning issues like medical treatment, education and employment.

　　Together with other organizations for rare diseases, the Association spares no effort to raise the

　　awareness of Government.

　　In cooperation with schools and media associations, ChinaDolls Association already made a great

　　amount of work: holding law symposiums, advocating policy support, proposing motions to

　　the National People's Congress.

　　调查研究Investigation & Research

　　开展针对成骨不全等罕见病患者生存状况的调查研究，以及罕见病群体在医学、政策、法律方面的研究，08年完成了中国第一份《成骨不全症患者的生活状况调查报告》，翻译编辑多部医学文献，并印刷出版《成骨不全症指南》。

　　The Association promoted "Investigation and Research" activities focused on rare diseases

　　(including OI) and covering the following analysis fields: medical treatment, policies and legal

　　matters.

　　In 2008 the first "Survey on the living conditions of OI patients" has been completed.

　　"OI Handbook" has also been printed and published.

　　志愿者发展Volunteers

　　志愿者是瓷娃娃发展的重要组成部分，我们本着"参与、专业、互助、快乐"的原则来管理和发展志愿者的工作， 有来自全国各地100多位志愿者，经过多次培训后分别在翻译组、电影沙龙组、期刊组、宣讲团、设计组、手工坊、网络组、天津病人服务组8个小组参与志愿服务。08年7月份志愿者共同讨论、修订的《志愿者工作手册》是一份完整的工作指南。并建有志愿者QQ群、邮件组、例会等交流平台。

　　In our Association, particularly important is the role played by Volunteers.

　　They are inspired by the principles of enthusiasm, participation, competence and mutual assistance.

　　They are coming from more than 100 different areas of our country.

　　After attending training courses, they can be employed in 8 main activity groups: "translation",

　　"movie salon" "newsletter", "explain and publicise", "design", "handwork",

　　"network groups", "Social Assistance for Tianjin patients".

　　The "Volunteer Handbook", discussed and revised in July 2008 by the volunteers is

　　a precious and complete manual.

　　Volunteer also promoted QQ groups, newsletters, regular meetings and other exchange and discussion

　　platforms.

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遗传缺陷的结缔组织病，又称脆骨症，具有遗传性，民间形象地称呼该人群为瓷娃娃。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，中国没有任何研究数据，按照以上的比例，估计应该有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;严重者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。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。

　　Osteogenesis Imperfecta (OI), also known as Brittle Bone Disease or Glass Dolls, is a genetic

　　connective tissue disease, whose clinical characteristics are fragile bones and bone deformities.

　　The total number of the OI patients comprises 1/10000 - 1/15000 of the global population.

　　There are 5 million OI patients in the world.

　　Currently, China has no data about the number of OI people in the country. Based on the above

　　proportion, it is estimated that there are about 100,000 OI patients now in China.

　　The symptoms of OI usually include: multiple fractures while in the mother's womb; the color

　　of sclera (whites of the eyes) shows blue, purple or grey; bone deformation; spinal curvature;

　　brittle teeth; and short stature due to short and bend bones.

　　In recent years, the Chinese media have frequently reported OI and OI patients in order to attract

　　more social attention.

　　However, the attention does not change the living condition of the patients.

　　Currently, very limited social assistance has been given to the population both by government

　　and civil society.

　　In China, most families of OI patients become extremely poor due to the extremely high medical

　　expenses.

　　Also because of the lack of policy support, very limited social assistance, the reliance on imported

　　drugs, the side effects caused by domestic medicine and common violations on their education and

　　employment rights, up to now the equal rights for OI patients in the fields of health care,

　　education, employment and social care have not been fully guaranteed.