日韩精品久久一区二区三区_亚洲色图p_亚洲综合在线最大成人_国产中出在线观看_日韩免费_亚洲综合在线一区

US EUROPE AFRICA ASIA 中文
China / Society

Event highlights plight of rare disease sufferers

By Zhang Yi (China Daily) Updated: 2016-09-09 08:40

 Event highlights plight of rare disease sufferers

Patients with brittle bone disease perform at a shopping mall in Jinan, Shandong province, to raise awareness of rare diseases. Fan Changguo / Xinhua

The ninth international Rare Disease Day, initiated by the European Organization for Rare Diseases, was marked on Feb 29 this year.

The date was chosen because such "leap days" are rare, only happening once every four years.

On and around this day, medical and research institutions as well as other organizations all over the world hold activities to raise awareness of rare dis-eases.

Event highlights plight of rare disease sufferers

One in every 2,000 newborns in China has a hereditary disease, such as amyotrophic lateral sclerosis or Pompe disease.

But according to Huang Rufang, director of the Chinese Organization for Rare Disorders, there is no system of national medical care for sufferers, especially as there is no clear definition of what constitutes a rare disease in China at present.

"Legislation for rare dis-eases faces multiple hindrances, there are barely any medical research funds in the field and the admission mechanism for orphan drugs (pharmaceutical agents developed specifically to treat rare medical conditions) is not in place," Huang said.

Sun Zhaoqi, a deputy to the National People's Congress, has brought forward a proposal regarding the prevention and treatment of rare diseases for 10 consecutive years, but this has never been adopted, as there is no government policy to refer to and therefore no medical insurance for patient reimbursement.

According to an investigation into China's small-and medium-sized pharmaceutical enterprises carried out by Yangcheng Evening News in February, most are keen to research and develop widely used medicines, but are less inclined to work on drugs for rare diseases due to the relatively small size of the market and slim profit margins on offer.

In addition, foreign drugs for rare diseases are not often introduced to China either, according to the investigation.

Even if the drugs are imported, they are rarely used in clinical treatment because patients cannot be reimbursed under existing medical insurance policies.

 

Highlights
Hot Topics

...
主站蜘蛛池模板: 女生羞羞网站 | 久久精品免费一区二区三 | 日韩欧美一区二区三区 | 久久久综合九色合综国产 | 黄色片视频免费看 | 精品国产色| 亚洲精品乱码久久久久久 | 成人午夜动漫在线观看 | 亚洲九九 | 久久久精彩视频 | 色综合天天娱乐综合网 | 91中文字幕在线 | 欧美日韩高清不卡免费观看 | 久久xxx| 三更饺子1最刺激的一段整集 | 欧美两性人xxxx高清免费 | 国产精品黄大片观看 | 精品国产一区二区三区四 | 91在线 在线播放 | 久草视频电影 | 日韩一区二区三区在线播放 | 久久精品视在线观看2 | 欧洲亚洲精品久久久久 | 精品国产精品国产 | 国产一级做人爱c黑人版 | 99热久久这里只精品国产9 | 久久久91精品国产一区二区三区 | 国产精品免费大片一区二区 | 久草2018| 精品免费在线 | 99视频精品| 亚洲第一成人影院 | 久久婷五月 | av免费网站在线观看 | 精品视频网站 | 国产精品成人av | 91精品国产综合久久久久 | 亚洲成人在线免费视频 | 婷婷色九月综合激情丁香 | 成人久久久 | 欧美日韩91|