China-Dolls Center for Rare Disorders(CCRD, formerly known as China-Dolls Care and Support Association), was foundedby individuals with Osteogenesis Imperfecta (OI) and various rare disorders inMay, 2008. In 2011 CCRD was registered under Beijing Civil Affairs Bureau as anon-profit organization. CCRD provides Medical Rehabilitation, IndividualSupport, Self-exploration and Empowerment, Public Advocacy, and Policy-makingand Research Services to people with OI and various rare disorders. CCRD worksfor removing social stigma, improving social security system, pushinglegislation, and promoting the equal rights of medication, education,employment, and social integration for this population.

Our values:

equality and respect, multi-cultureand integration, fidelity, democracy, innovation

Our culture:

Every life serves its purpose,every life shall be respected

Our mission:

To create an environment wherepeople with Osteogenesis Imperfect and various rare disorders share equalrights with and receive respects from the society

Objectives:

Promote the accessibility to medication, education,employment, etc. for people with Oesteogenesis Imperfect and various raredisorders;

Explore and promote mental health, self-esteem, autonomy,and independence of people with rare disorders;

Encourage the autonomy and organizational development ofrare disorder networks.

Facilitate networking and self-support among individualswith rare disorders and their families;

Advocate for awareness of rare disorders throughout thesociety and promote multicultural integration of this population;

Initiate and conduct researches and studies on raredisorders population;

Push legislation and improve social security system forpeople with rare disorders.

01.  MedicalRehabilitation Services

Osteogenesis Imperfecta(OI) is a congenitalgene deficit, which results in fragile bones. There is no known cure so far.People with OI usually need life-long medical treatment. Medical RehabilitationServices focus on the physical improvement of this population. We provide comprehensiveassessment, surgery and medical treatment, assistive technology, genetictesting, etc. to reduce physical impairment and improve independent livingskills. Besides, China-Dolls Center for Rare Disorders has been collaboratingwith Shandong Province Hospital, providing volunteering services forhospitalized individuals with OI since 2010. Medical Rehabilitation Serviceshave reached almost a thousand individuals with OI.

Recommended Project — Iron MenPlan

From China-Dolls to Iron Men

Iron Men Plan project serves people withOsteogensis Imperfecta. Comprehensive assistance plans are implemented todisadvantaged individuals and their families, providing surgeries, medications,physical rehabilitation, and assistive devices. The goal is to maximize theirphysical health and to minimize functional limitations. Till May 31, 2013, morethan 500 individuals have been served under this project nation-wide. The yearof 2013-2014, estimated 200 disadvantaged individuals will be served under IronMen Plan project, with a maximum budget of 30,000 RMB for each individual.

02.  Individual Support Services

Many people with rare disorders experience barriersin daily life. They face difficulties in activities of daily living, education,employment, and intimate relationships. Individual Support Services focus onevery aspect of an individual with rare disorders. We consider each individualas a whole person. We provide information on China-Dolls’ bimonthly magazines,individual visits and interviews, free milk, 1 to 1 financial aids, educationand employment opportunities, and group gatherings.

Recommended Project A.— Pocket Money project

China-Dolls Center for Rare Disorders(CCRD) provides Pocket Money project to children under 18 years old with raredisorders and from household with low income. All funds raised from the societyare divided evenly and wired to these children (with a maximum of 200 RMB permonth for each child). We encourage these children to use their pocket money onbooks, snacks, and toys etc. We call for everyone’s support for the childrenwith are disorders to fight against their illnesses and to live happily as anyof their ordinary young fellows.

Recommended Project B.— China-Dolls National Conference for People with OsteogenesisImperfecta (NCPOI)

Not AloneAnymore

China-Dolls Center for Rare disorders holdsChina-Dolls National Conference for People with Osteogenesis Imperfecta (NCPOI)every two years. Individuals with OI and their families gather together fromall over the country. Individuals, along with medial experts, policy makers,and advocates discuss topics of rehabilitation, policy training, mental health,employment, and peer support. NCPOI calls for attention and support from the governmentand society and advocates for the OI population. Two conferences have been heldin 2009 and 2011 successfully with over 400 participants with OI.

Recommended Project C.— Give Me a Fulcrum project

Give every individual with rare disorder afulcrum, and they will achieve their dreams!

Individuals with rare disorders share thesame dream. They dream, one day, they would be able to go to school, exploretheir abilities, have a job, start a family, and accomplish their dreams, justlike other ordinary people. Give Me a Fulcrum project promotes education byproviding scholarships, promotes employment by providing training andopportunities, and promotes marriage by providing wedding gifts.

03. Self-exploration and Empowerment Services

In addition to providing solutions andassistance to the rare disorder population, we consider these groups of people sourceof solutions to their own problems. We believe they are powerful and well motivated.

Self-Exploration and Empowerment Servicesutilize workshops, peer support networking, and project funding to explore andempower elite members of each rare disorder group. These services target tohelp these individuals embrace their physical conditions, explore possibilitiesof lives, focus on their skills and abilities, positively affect their peersand contribute to the society as a part of solution to the issues of raredisorders.

Recommended Project A.— Independent Living project

Independent Living Project aims to improvethe independence and autonomy of individuals with OI, rare disorders and variousdisabilities. With a series of workshops, mentoring, and activities, one willgradually grow from being taken care of to a self-determining, independent, andsocial individual.Independent Living Project consists of four aspects:Self-esteem Building, Family Growth, Social Interaction, and IndependentAction.

Recommended Project B.— I CAN Camp

I CAN Camp focuses on the growth of theelite individuals with OI, rare disorders and various disabilities. It providesa platform for these individuals to communicate, collaborate, share, and growtogether.

Each I CAN Camper participates in twosessions of interactive trainings. Besides, they are offered small amount ofproject funds, support for actions and experience of a six-month journey ofself-exploration with peers. I CAN Camp started in 2012 and now is an annualproject.

04.  PublicAdvocacy Services

Public Advocacy Services is a veryimportant part of the current services China-Dolls Center for Rare Disordersprovides. We would like to promote the awareness of Osteogenesis Imperfecta andvarious rare disorders, to promote the understanding of, and empathy and interactionwith the population throughout the society. Our goal is to create anenvironment where people with rare disorders bring a unique perspective as apart of a multicultural society. We organize various activities, including campaign,fundraising, media coverage, etc. There have been more than 200 events and30,000 publications have been circulated so far.

05. Policy-making and Research Services

China-Dolls Center for Rare Disordersconducts in-depth and regular researches on the rare disorder population. Wepublish the results of the researches through media to promote public interestin this population. We call for attention from the government by organizingseminars and participating in policy-making process. We hope to improve thesocial security system for people with rare disorders.

China-Dolls Fund for Rare Disorders (CFRD)

China-Dolls Fund for Rare Disorders (CFRD)was launched by China-Dolls Center for Rare Disorders with China Social WelfareFoundation in August, 2009. CFRD provides medical and individual support forpeople with Osteogenesis Imperfect and various disorders as well as for theirfamilies. CFRD is the first fund established specifically for the raredisorders population in China.

contact information

Tel：010-63458713   63459745

Add：北京市丰台区南三环东路27号院芳群公寓1号楼C座2404室（100078）

E-mail：ciwawa@chinadolls.org.cn

Tel：0531-62301230

Add：山东省济南市槐阴区经四纬十二路绿地卢浮公馆1号楼2单元2801（250021）

Web: www.chinadolls.cn

Weibo：@瓷娃娃

爱心小铺：iciwawa.taobao.com

捐赠热线：010-63459745