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Phase 47: Uncover the veil of mysteries behind the rare diseases


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Activity background:

Lately, the "Ice Bucket Challenge" has become a hot topic. This public welfare activities coming from the United States aims to let more people know a rare disease called Amyotrophic Lateral Sclerosis (ALS), at the same time also to raise money to help the treatment of this disease. With more and more celebrities being invited to join the ice bucket challenge, such groups with rare diseases like ALS gradually come into the public eyes.

       Just as the name implies, rare diseases refer to the disease that have a very low morbidity. According to the definition from World Health Organization (WHO), rare diseases are the diseases whose suffers accounts for 0.65‰~1‰ of the world population.  On the basis of each country’s situation, there are some differences about standard for recognizing the rare diseases between different countries. For now, the number of the confirmed rare diseases globally is 5000~6000, which accounts for about 10% of the human disease. The morbidity of the rare diseases is extremely low, which lead to the research resources can be limitedly required. Therefore, the medicines for large amount of the rare diseases are not available and clinic treatment of them face much difficult.

       Due to the lack of relevant legal policy, most of the rare diseases patients in our country could not receive effective treatment. For a long time, they face much difficult towards hospitalization, getting education, obtaining employment and social welfare, and also their health right and other legitimate interests are hard to be guaranteed. Currently, rare disease issues have been a serious social problem that can’t be ignored. This “Face to Face” session is expected to build a communication platform for experts, scholars and the organization of rare diseases to discuss the relevant medical treatments, policies and social issues. We hope to call for all the public to pay long-term attention to rare diseases, to promote the introduction of rare diseases related policies and the long-term development of China's rare diseases cause.

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Scientists and Media: Face to Face Program
      
    Original of the Activity
    •During the Annual Conference of CAST in 2010, the President of CAST, Han Qide, called on Carrying Science Communication Activities on the basis of Focal and
    Hot Issues.
    Based on this proposal,
    scientists and media:
    face to face came into being.
    •Launched since 2011


    Background
    •The phenomenon of keeping silence of
    scientists.
    •The public shows a real
    thirst for science
    information during
    focal issues.
    •The gap between
    scientist and the public,
    and the media.

    Function
    •Fulfilling three functions:
    Science communication requirements...
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Working with us
China Science Media Center (ChinaSMC) is dedicated to promoting the interaction between scientists and media, constructing sci & tech information platform for the public who could access to accurate, authoritative and timely information, especially supplying information ...[Detail]
For Journalists
The Science Media Centre provides journalists with what they need in the timeframe they need it, from interviews with leading experts to timely press briefings on topical issues.
For scientists
As well as providing advice and support to scientists already engaging with the media, the Science Media Centre runs events to introduce experts to what that involves.
For press officers
Primarily a press office, the Science Media Centre works closely with press officers from universities, industry, research funders and leading science and engineering institutions.

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