綜合信息Info & Advice
為病人提供綜合信息是協會最基本的工作，通過瓷娃娃熱線、網站、論壇、QQ群、期刊等形式，與醫學專家聯合向病人群體提供醫療咨詢、心理支持、接收處理求助信息等，並形成良好的病人互助網絡。直接覆蓋全國各地近500個脆骨病家庭。
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.
公眾宣教Education
公眾對於成骨不全等罕見病群體缺乏了解，罕見病知識的宣傳教育變得非常重要，本協會通過高校及社區宣講、瓷娃娃畫展、義賣、講座、媒體參與等形式廣泛普及疾病知識及群體狀況，累計開展20余場活動，發放資料近萬份。
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
這是壹份面向成骨不全患者及家庭的綜合性期刊，主要內容涉及醫療、護理和關懷，病人及家庭的交流、教育、法律以及就業保障等相關信息，是壹份能真實反應成骨不全群體聲音以及為成骨不全群體提供信息交流的民間刊物。每壹期都免費郵寄給病人、家屬、公益組織、醫生等相關組織和個人。每期印刷500本，且在各大網站發布PDF版本供更多人閱讀和下載。
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.
壹對壹資助One Help One(OHO)
這是壹個針對貧困家庭脆骨病兒童開展的救助項目，協會為貧困家庭找到壹個愛心人士結成對子，資助額度為每月100-200元不等，主要用於改善受助兒童的生活、教育環境，該項目的特點是長期性、小額性，捐助款由資助方直接發放給受助家庭，大大增加了透明度和可信度，已經資助了12個家庭。
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.
星期八電影公社Film salon on csday
星期八電影公社是壹個以播放反映社會問題的影片來達到向公眾傳播公民社會理念，促使公眾對疾病弱勢群體以及社會問題的思考，也通過這種定期的活動為參與者提供壹個信息交流和經驗分享的平臺。在雕刻時光咖啡館（北航店）每兩周周日舉辦壹期，累計超過500人參與。
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
這是壹個通過制作手工產品來為瓷娃娃籌款的項目，舉辦不定期的手工坊，所有手工作品都將被用於公益義賣，所得款項主要用於瓷娃娃的教育和醫療救助。每期都請資深手工老師來教授手藝，讓參與者在快樂學手藝的同時奉獻了愛心！
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
由於目前國內還沒有相應的政策法律來保障罕見病群體的權益，缺乏有效的醫療保障和社會救助，患者的教育、就業歧視現象非常嚴重，瓷娃娃協會積極開展在醫療、教育、就業方面的法律咨詢、法律援助、公益訴訟，聯合其他罕見病組織開展政策倡導，呼籲政府盡快出臺罕見病政策。本協會已經通過與學校協調、召開法律研討會、兩會提案、政策倡導、媒體參與等形式開展了大量工作。
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.
調查研究Investigation & Research
開展針對成骨不全等罕見病患者生存狀況的調查研究，以及罕見病群體在醫學、政策、法律方面的研究，08年完成了中國第壹份《成骨不全癥患者的生活狀況調查報告》，翻譯編輯多部醫學文獻，並印刷出版《成骨不全癥指南》。
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.
誌願者發展Volunteers
誌願者是瓷娃娃發展的重要組成部分，我們本著“參與、專業、互助、快樂”的原則來管理和發展誌願者的工作， 有來自全國各地100多位誌願者，經過多次培訓後分別在翻譯組、電影沙龍組、期刊組、宣講團、設計組、手工坊、網絡組、天津病人服務組8個小組參與誌願服務。08年7月份誌願者***同討論、修訂的《誌願者工作手冊》是壹份完整的工作指南。並建有誌願者QQ群、郵件組、例會等交流平臺。
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.