中新网沈阳2月28日电 (记者 秦逸)记者28日从壹基金和罕见病组织共同发起的第二届中国罕见病高峰论坛获悉，在第六个国际罕见病日到来前，壹基金联合民间机构通过微博等渠道发起呼吁关注罕见病的倡议，有超过80万人次网友积极响应。同时，还在全国15个城市开展了50多场次的各类宣传罕见病知识的活动。

Beijing, shenyang, feb 28 (Reuters) (The reporter Qin Yi)Reporter from 28, one foundation and rare diseases organization launched the second peak BBS learned that China's rare disease,In the sixth international rare disease day before arrival,One foundation combined with non-governmental organizations through weibo and other channels to a rare diseases initiative calls for attention,There are more than 800000 netizens responded positively.At the same time,Also carried out in 15 cities across the country more than 50 events of all kinds of knowledge about rare diseases.

　　28日是第六个国际罕见病日，国内权威专家学者齐聚论坛，共同探讨罕见病解决方案，推动罕见病领域的政策出台。当日，2013年“壹基金海洋天堂计划”罕见病儿童关爱救助项目也正式启动。在会场外，有80万人次网友响应壹基金和民间组织的号召，表达对于罕见病患者的关爱。

28 is the sixth international day for the rare disease,Domestic authoritative experts and scholars gathered in the BBS,To discuss solution for rare diseases,Promote policies in the field of rare diseases.On the day,In 2013,"The foundation of Marine heaven plan"Rare diseases child care programs also officially launched.Outside the venue,There are 800000 m Internet users response to the call of one foundation and civil organizations,Caring for rare diseases.

　　据悉，“壹基金海洋天堂计划”罕见病儿童关爱救助项目两年多以来覆盖10多种罕见病，共计为2000余人次儿童提供关怀和救助服务。但是罕见病对于家庭的最大影响，就在于高昂的医药费用和难以获得的医疗救助，让家庭和儿童遭受巨大的压力。

It is understood,"The foundation of Marine heaven plan"Rare diseases child care programs covering more than 10 kinds of rare disease since more than two years,A total of 2000 more children to provide care and assistance services.But rare diseases for maximum impact of the family,Lies in the high medical costs and difficult to get medical treatment,For families and children suffer from great pressure.

　　由于罕见疾病的发生机率很低，缺乏厂家生产药品，即使厂家研制出对症药品，由于患者市场相对较小，其价格也是高的惊人，绝非一般患者所能承受。另一方面，罕见病儿童还要面对社会的忽略和大众异样的眼光。

Because of the rare disease occurrence probability is very low,A lack of manufacturer production of drugs,Even if the manufacturer to develop symptomatic drugs,Because the market is relatively small,The price is also staggering,Not the patient can afford.On the other hand,Rare diseases in children and in the face of society to ignore and strange eyes of the masses.

　　壹基金有关人士表示，所有这一切，使得这些患者们在找寻健康和正常生活的道路上是困难重重，衍然成为社会医疗下的孤儿，在许多国家和地区，甚至是一些发展中国家，都有国家颁布的罕见疾病法律，通过在药品生产、医疗保障、社会保险、个人权益等多方面的强制规定来确保患者的治疗救助和正常生活。(完)

One foundation officials said,All of this,Make these patients on the way to find health and normal life is fraught with difficulty,Yan ran into social medical treatment of the orphans,In many countries and regions,And even some developing countries,Has a rare disease of the laws declared by the state,In pharmaceutical production/Health care/The social insurance/Personal rights and interests of various mandatory provisions to ensure that the treatment of patients with relief and a normal life.(After the)