Ice Bucket Challenge Raises Awareness of Rare Diseases

September 5, 2014
By Amanda WuEditor: Amanda Wu
Ice Bucket Challenge Raises Awareness of Rare Diseases

Wang Yi'ou, founder and director of the China Dolls Center for Rare Diseases, gives a lecture on the Ice Bucket Challenge and rare disease in Beijing on September 4, 2014. [Women of China/Amanda Wu]

The Ice Bucket Challege has offered a good opportunity to make rare diseases known to the public, said Wang Yi'ou, founder and director of the China Dolls Center for Rare Diseases, in a public lecture in Beijing on September 4, 2014.

The Ice Bucket Challenge, a charity activity initiated by the Amyotrophic Lateral Sclerosis (ALS) Association in the United States, has presently been sweeping around the world. The activity involves dumping a bucket of ice water on someone's head to promote awareness of the disease amyotrophic lateral sclerosis (ALS) and encourage donations to ALS patients and medical research.

In China, the public platform of Sina Weibo (http://gongyi.weibo.com/) and the China Dolls Center for Rare Diseases jointly launched the Ice Bucket Challenge to call for the public to care for patients with rare disease, including the ALS, and opened an online donation program (http://gongyi.weibo.com/r/215182) on August 17, said Wang.

By August 31, the special fund of Ice Bucket Challenge had raised about 8.15 million yuan (US $1.33 million), of which more than 7.28 million yuan (US $1.19 million) came via the Sina online donation program and more than 5.57 million yuan (US $0.91 million) was ear-marked for aid services benefiting ALS patients, according to Wang.

During the lecture, Wang also briefed on rare diseases, problems and efforts the China Dolls Center for Rare Diseases has made since it was established in May 2008.

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 afflict the patients throughout their entire life.

In the world, there are about 6,000-7,000 categories of rare diseases, accounting for 10 percent of all human diseases, and only one percent of rare diseases can receive effective drug treatments, while China has more than 10 million patients with various rare disease, said Wang.

At present, China doesn't have enough social insurance policies for rare diseases, whose treatment is not included on the standard medical insurance, and the high costs of medial treatment has impoverished numerous families, noted Wang.

During the lecture, Wang played an on-the-street interview that she did on rare diseases in 2012, which showed that a great many of the people polled had weak knowledge of rare diseases.

It's good to see that the Ice Bucket Challenge has raised public awareness of rare diseases, especially with more and more celebrities joining in the charity activity, said Wang.

With regards to the donations, Wang said the center would host an open tender and invite experts to select a competitive company or organization to run the fund to make sure that all the donations can be used to aid patients with rare disease and their families.

Ice Bucket Challenge Raises Awareness of Rare Diseases

Wang Yi'ou, founder and director of the China Dolls Center for Rare Diseases, gives a lecture on the Ice Bucket Challenge and rare disease in Beijing on September 4, 2014. [Women of China/Amanda Wu]

(Women of China)

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