China-Dolls Fund For Rare Disorders was established in August 2009 by China-Dolls Care and Support Association, under the supervision of China Social Welfare Education Foundation. It is the first exclusive fund for rare diseases population in China. Its objective is to offer medical support as well as social care for rare diseases patients and families.

Currently, the majority of Osteogenesis Imperfecta (OI) and other rare diseases families live in extreme poverty. In most cases, the disease has been closely correlated to the deprivation. Substantial families cannot afford even the basic medication. Further, education and employment opportunities are not optimistic either. Besides OI, there are other different types of rare diseases of low incidence, usually occurred due to genetic disorders. Rare diseases are less likely to be diagnosed accurately due to unfamiliarity in China, but most of them can be fatal. Unfortunately, there has been little social awareness up till now.

Every family has a choice for next generations, meanwhile, every mother also has a chance of conceiving a baby with genetic defects, which we now would like to compensate with love.

Use of funds:

1. To initiate projects assisting OI and other rare diseases patients on education, medication, psychological supports, employment, etc.;

2. To organize workshops on information of OI and other rare diseases and anti-discrimination campaigns;

3. To cooperate and coordinate medical research projects related to OI and other rare diseases;

4. To promote academic researches and exchanges about OI and other rare diseases involving medical specialists, scholars, and patients, etc.

Donation information:

Account name: China Social Welfare Education Foundation

Bank name: China Everbright Bank, Chaoyang Branch

Account number: 3506 0188 0000 50322

N.B. Please indicate “China-Dolls” when donating.

Contact us:

Donation hotline: +086 (10) 6345 9745

Email: ciwawa@chinadolls.org.cn

Website: www.chinadolls.org.cn

Disease Overview

Osteogenesis Imperfecta (OI), also known as Brittle Bone Disease or Glass Dolls Syndrome, is an autosomal dominant genetic connective tissue disease, whose clinical characteristics are fragile bones and bone deformities. The occurrence of affected OI individuals in the general population is 1/10000 ~ 1/15000.  There are about 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 frequency range, it is estimated that there are as many as 130,000 (1,300,000,000 x .00010) OI patients now in China.

The symptoms of OI usually include: multiple fractures while in the mother's womb; blue, purple or grey sclera (whites of the eyes); bone deformation; spinal curvature; brittle teeth; and short stature due to shortened and bent bones.

In recent years, Chinese media have frequently reported OI and OI patients, which attracts much social attention. However, this attention does not change the living condition of the patients. Today, due to the lack of policy support, very limited social assistance is available to the OI population by the government and civil society. In China, most families of OI patients become extremely poor because of the very high medical expenses involved. In addition, the reliance on imported drugs, the side effects caused by domestic medications, frequent violations of their rights to health care as well as their equal rights to education, and employment, all these problems have put OI individuals in unprotected situation.

In fact, OI is just one of the rare diseases groups. It is the tip of the iceberg. As WHO (World Health Organization) defined, rare diseases have a prevalence of the total population of or lower than 0.65 ‰ ~ 1 ‰. At present, there are 5000 ~ 6000 species of rare diseases that have been confirmed, accounting for about 10% of human diseases (such as hemophilia, phenyl-ketotic, high blood's disease, tuberous sclerosis, achondroplasia disease, pulmonary hypertension, nervous muscular weakness, etc.). According to this ratio, the total amount of all kinds of rare diseases population should be at least as millions, which means it has to be brought to the surface.

China-Dolls Care and Support Association

China-Dolls Care and Support Association was founded by Osteogenesis Imperfecta (OI) patients in May 2007, and was formally registered in June 2008 in Beijing. This association is an non-profit and non-government organization of commonweal. It works to increase social awareness and understanding concerning OI and other rare diseases patients, to reduce social discrimination, to protect their equal rights to treatment, education and employment, and to advocate the development of policies to increase social benefits for OI and other rare diseases groups.

China Social Welfare Education Foundation