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 platform for all the patients
through hotlines, websites, forums, 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.
