China Launches Children's Rare Diseases Fund

December 27, 2014
By Zhang PingEditor: Amanda Wu
China Launches Children's Rare Diseases Fund
Director of the China National Committee for the Wellbeing of the Youth Gu Xiulian presents a plaque to the China Child Rare Disease Aid Fund at its launch at the China National Children's Center in Beijing on December 26, 2014. [Women of China/Zhang Ping]

The China Child Rare Disease Aid Fund of the China Social Assistance Foundation (CSAF) was launched in Beijing on December 26, 2014. It is the first special fund that the country has established for children with rare diseases.

The fund aims to help children with rare diseases to develop their potential and bolster their courage. It will also help with employment and entrepreneurship for their family members. The fund will support the developing of organizations to investigate rare diseases, advance formulation of rare disease policies and regulations, and implement rare disease exchange and cooperation internationally to promote the development of social assistance for children afflicted by diseases, and enhance social harmony.

At the launch, President of DeExpo Zhang Yong donated 5,000,000 yuan (US $804,531) to the fund on behalf of his company.

Director of the Chinese Organization for Rare Disorders Huang Rufang introduced the problems rare disease patients have with medical treatments and living conditions, and shared inspiring stories of patients and volunteers.

A rare disease, also referred to as an orphan disease, is any disease that affects a small percentage of the population. Most rare diseases are genetic and affect the patients throughout their entire lives.

In the world, there are approximately 6,000 to 7,000 categories of rare diseases, accounting for 10 percent of all human disease. Only 1 percent of rare diseases have effective drug treatments, and China has more than 10 million patients affected by various types of rare diseases.

"We are not afraid of death but are reluctant to leave a nice life. We are not afraid of waiting but are in fear of no hope," Huang said. He also called upon the government and public to extend greater help to those with rare diseases.

Director of the China National Committee for the Wellbeing of the Youth Gu Xiulian presented certificates to honorary ambassadors, Fan Chongyan and Zhang Yong, and also a plaque for the fund.

Secretary General of the CSAF Hu Guangfa also attended the launching held at China National Children's Center.

China Launches Children's Rare Diseases Fund

Director of the China National Committee for the Wellbeing of the Youth Gu Xiulian speaks at the launch of the China Child Rare Disease Aid Fund at the China National Children's Center in Beijing on December 26, 2014. [Women of China/Zhang Ping]

China Launches Children's Rare Diseases Fund

Director of the China National Committee for the Wellbeing of the Youth Gu Xiulian (C) presents certificates to honorary ambassadors, Fan Chongyan (L) and Zhang Yong (R) at the launch of the China Child Rare Disease Aid Fund on December 26, 2014. [Women of China/Zhang Ping]

China Launches Children's Rare Diseases Fund

President of DeExpo Zhang Yong (L) donates 5,000,000 yuan (US $804,531) to the China Child Rare Disease Aid Fund  at the China National Children's Center in Beijing on December 26, 2014. [Women of China/Zhang Ping]

China Launches Children's Rare Diseases Fund

Honorary Ambassador Fan Chongyan speaks at the launching of the China Child Rare Disease Aid Fund at the China National Children's Center in Beijing on December 26, 2014. [Women of China/Zhang Ping]

(Women of China)

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