北京举行首个罕见疾病日

February 29th marks the fifth international Rare Disease Day. Hundreds of organizations from more than 40 countries and regions worldwide have organized awareness-raising activities around the slogan "Rare but strong together".
2月29日是国际罕见病日。来自全世界40多个国家和地区的几百个组织以“改变从了解开始”为口号，组织了提高意识的活动。

Rare Disease Day is an annual, awareness-raising event, coordinated by the European Organization for Rare Diseases and the National Alliances of Patient Organizations. Activities take place across Europe, all the way from Russia, continuing to China and Japan, in the US and Canada, and finally in Australia and New Zealand every year. The focus of this year’s event is Solidarity.
罕见病日是提高意识的年度活动，是由欧洲罕见病组织和全国患者联盟组织协调发起的。每年的活动在全欧洲举行，一直从俄罗斯持续到中国、日本、美国和加拿大，最后到澳大利亚和新西兰。今年活动的焦点是团结。

During the Beijing summit, health officials, experts and some patients discussed rare diseases from the medical, legal, social and policy-making perspectives.
在北京峰会上，卫生部官员、专家和一些病人从医疗、法律、社会和政策制定等方面对罕见病进行讨论。

Huang Yu, vice director of Medical Department of Beijing University said: “Although we call it rare disease, it actually needs social, medical and political areas to work together.”
北京大学医学系副主任Huang Yu称：“虽然我们称之为罕见病，但是事实上它需要社会、医疗和政治领域的合作。”

A senior Chinese health official attending the summit spoke on the importance of acknowledging and working towards a cure for rare diseases, followed by three featured seminars. Mrs. Zhang Quanling, the promotion ambassador, held a seminar regarding the current social securities for patients of rare disease in China.
在三个专门研讨会后，参加峰会的一名中国卫生部的高级官员提到认定和为罕见病治疗而努力的重要性。宣传大使Zhang Quanling夫人举办了一次关于目前中国罕见病病人的社会保障的研讨会。

A rare disease, usually refers to any disease that affects a small percentage of the population. It is estimated that there are between 6 and 7 thousand distinct rare diseases in the world, and over 10 million rare disease patients in China. Few drugs have been founded to cure the illnesses and their prices are usually out of reach to those suffering. Very few companies are willing to manufacture inexpensive medicine, due to low cost benefit, making the need for global social security higher.
罕见病通常少数人感染的疾病。据估计，世界上有六七千种不同的罕见病，中国的罕见病病人超过1000万。用来治疗这些疾病的药物很少，而且价格通常不是患者所能承受的。由于成本效益低，几乎没有公司愿意生产便宜药，使得全球的社会保障需求更高。

Reporter: “Today, the diagnosis for rare disease patients remains a challenge. Most of them are lacking dedicated therapies and medicines. But what they need is to be treated as normal people. More concerns should be given to them.”
记者：“今天，对罕见病病人的诊断仍是一个挑战。他们中的大多数人缺乏专门的疗法和药物。但是他们需要的是像正常人一样被对待。应该给予他们更多的关注。”