基本介紹
- 公司名稱：瓷娃娃關懷協會
- 總部地點：北京
- 成立時間：2007年5月
- 公司性質：公益性、非盈利性民間組織
- 公司口號：還好，我們的愛不脆弱。
宗旨,口號,寓意,目標,項目介紹,疾病簡介,
宗旨
建立成骨不全症等罕見疾病群體獲得尊重、平等的社會環境。
Mission: To create a better environment for OI and other rare disease patients, to build a society
based on mutual understanding and equality.
口號
還好，我們的愛不脆弱。
Our Motto : Love is still strong.
寓意
瓷娃娃，寓意成骨不全症患者猶如瓷器做的洋娃娃一樣可愛、而又易碎，符合患者的外貌和容易骨折的特徵，同時英文“China-dolls”又賦予了“中國”和“瓷器”的雙重含義，象徵成骨不全症患者等脆弱群體是中國公民中的重要一部分。
“China-Dolls Association” : meaning of the name
The name “China-Dolls” reflects the characteristics of OI patients---vulnerable.
They could be compared to porcelain dolls: they are so lovely but their bones are fragile and easily
breakable.
Meanwhile, the word "China" in English both refers to "porcelain" and to a specific "nation" in the
world.
The message the Association wants to convey is that OI and other rare disease patients are an
important part of Chinese society.
目標
1、開展成骨不全症等罕見疾病知識宣傳教育
2、開展疾病群體及家庭的救助工作
3、倡導社會對罕見疾病群體的關愛
4、推動患者醫療、教育、就業的可及性
5、建立罕見疾病患者和家屬的交流、互助網路
6、為患者及其家庭提供法律援助
7、開展罕見疾病及人群的調查和研究
8、推動政府在罕見疾病領域的政策出台
Objectives:
1. To increase knowledge about OI and other rare diseases
2. To develop “Aid & Support” programs for the patients and their families
3. To raise social 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 provide legal aid to the patients and their families
7. To implement Investigation&Research
8. To advocate policy support for rare disease patients
項目介紹
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諮詢、心理支持、接收處理求助信息等，並形成良好的病人互助網路。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餘場活動，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
這是一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，是一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。每一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.
一對一資助One Help One(OHO)
這是一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一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
星期八電影公社是一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一個信息交流和經驗分享的平台。在雕刻時光咖啡館（北航店）每兩周周日舉辦一期，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
這是一個通過製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、就業方面的法律諮詢、法律援助、公益訴訟，聯合其他罕見病組織開展政策倡導，呼籲政府儘快出台罕見病政策。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年完成了中國第一份《成骨不全症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.
志願者發展Volunteers
志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志願者的工作， 有來自全國各地100多位志願者，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、網路組、天津病人服務組8個小組參與志願服務。08年7月份志願者共同討論、修訂的《志願者工作手冊》是一份完整的工作指南。並建有志願者QQ群、郵件組、例會等交流平台。
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.
疾病簡介
成骨不全症(osteogenesis imperfecta, OI)是以骨脆弱和骨畸形為臨床特徵的常染色體顯性遺傳缺陷的結締組織病，又稱脆骨症，具有遺傳性，民間形象地稱呼該人群為瓷娃娃。全人類各種族內男女均有發病，總發病率約為1/10，000—1/15，000，全球估計共有500萬名OI患者，中國沒有任何研究數據，按照以上的比例，估計應該有10萬人左右。疾病的表現通常為鞏膜通常呈現藍色、紫色或灰色；嚴重者在母親子宮內即並發多處骨折；進行性骨變形，長骨短且彎曲，造成身材極度矮小；脊柱傾向彎曲，牙齒硬而易脆等症狀。
在近幾年中國各地媒體的報導中頻繁出現此病人的相關報導，並引起很多人的關注，但是社會的關注並沒有改變該群體的生活狀況。政府和民間機構都還沒有對這一個人群提供基本的援助。大部分成骨不全症患者的家庭生活極其困苦，患者醫療費用負擔沉重，政府缺乏對該疾病的政策支持，社會救助欠缺，藥品依賴進口以及國產藥品副作用大，教育歧視和排斥現象非常嚴重，患者在治療、教育、就業和關懷方面的合法權益難以得到保障。
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.
