中新社北京3月2日电 题：瓷娃娃：还好，我们的爱不脆弱

China news agency Beijing, March 2 (Reuters):Porcelain doll:ok,Our love is not fragile

　　作者 董子畅

The author Dong Zichang

　　“对于瓷娃娃来说，他们一生中可能都在骨折与疼痛、白眼与歧视、贫困和内心的挣扎中度过。他们也是孤单无助的。他们不单单需要物质上的救助，身体上的康复，也同样需要心理疏导和社会融入。”瓷娃娃罕见病关爱中心创始人王奕鸥2日接受中新社记者专访，如此说道。

"For porcelain doll,They may be in fractures and pain in life/Supercilious look and discrimination/Poverty and internal struggles.They are lonely and helpless.They need not only material help,Physical rehabilitation,Also need psychological counseling and social integration."Porcelain doll rare disease care center founder Wang Yiou 2 had an interview with China news agency reporters,So said.

　　这个27岁的姑娘有一双碧蓝、清澈的大眼睛，倘若忽略她一米多一点的身高，她绝对是个迷人而可爱的女孩。

The 27-year-old girl has a pair of dark blue/The clear eyes,If I ignore her a little more than a metre in height,She is a charming and lovely girl.

　　王奕鸥患有脆骨病，医学名称为“成骨不全症”，那双蓝色的眼睛，是典型症状之一——蓝色巩膜。王奕鸥从1岁到16岁，曾经历6次骨折。她说：“我还算幸运的，有的病人甚至发生几十次，甚至上百次骨折。”

Wang Yiou suffer from cartilage disease,Medical name for"Osteogenesis imperfecta",His blue eyes,Is one of the typical symptoms - blue sclera.Wang Yiou from age 1 to 16,Through 6 fractures.She said:"I'm lucky,Some patients even dozens of times,Fracture or even hundreds of times."

　　刚刚过去的2月28日是“国际罕见病日”。国际罕见病日由欧洲罕见病组织于2008年2月29日发起，以这个四年一次的日子意寓罕见病之“罕见”，自2009年起将每年2月的最后一天定为国际罕见病日。

The past is on February 28"The international day for the rare disease".International rare disease day by the European organization for rare diseases on February 29, 2008,In the four years at a time of day a meaning of rare diseases"rare",Since 2009, will be the last day of February every year as the international day of rare diseases.

　　今年，国际罕见病日中国区的罕见病标志定为“四叶草”，借用它幸运的含义，旨在寄予罕见病患者真爱、健康、希望以及幸福的四重寓意。

This year,The international day of rare diseases in China marks a rare disease"A clover",The meaning of borrow it lucky,To send to rare diseases of true love/health/Four heavy moral hope and happiness.

　　成骨不全症患者被称为“瓷娃娃”，他们打个喷嚏、提个被子，甚至一个拥抱，都可能会骨折。

Patients with osteogenesis imperfecta is called"Porcelain doll",They sneezes/Make a quilt,Even a hug,Are likely to fracture.

　　“目前世界上还没有治愈的方法，根据病情轻重分七种类型。全国关注瓷娃娃的医院非常少，可以说不超过10家。”王奕鸥向中新社记者表示，疾病本身不影响寿命，但有些关键部位的骨折可能会致命。目前的治疗只能慢慢减少骨折次数，改善畸形部位。

"There is currently no cure in the world,According to the illness weight points seven types.Very little national attention porcelain doll of the hospital,Can say no more than 10."China news agency reporters Wang Yiou,The disease itself does not affect the life,But some of the key parts of the fracture can be deadly.Current treatments can only slowly reduce the number of fractures,Improve the deformed parts.

　　作为一个公益组织，成立于2007年的瓷娃娃罕见病关爱中心向患者提供医疗、生活以及教育就业方面的援助。“根据个案，我们会提供上限3万元人民币的补助。罕见病患者经常会有因病致贫的家庭，特别是那些比较偏远的地区，就医不对症，花费了昂贵的医药费，等到得知病情的时候，钱也所剩无几。”王奕鸥介绍道，“我们尽最大的努力给与他们身体上的支持，希望社会能给与他们教育和就业的支持。”

As a public welfare organization,Founded in 2007, the porcelain doll of rare diseases care centers provide care to patients/Life and education of employment assistance."According to the case,We will provide the maximum of 30000 yuan in subsidies.Rare disease often have poverty due to illness in the family,Especially those in remote areas,Go to a doctor does not suit the,Took expensive medical bills,When that condition,Money is running out."Wang Yiou said,"We try our best to give them physical support,Hope that society can give them the support of education and employment."

　　谈到教育和就业，王奕鸥说：“瓷娃娃罕见病并不影响智商，其实他们都非常聪明。成年的患者也在画画、十字绣等手工方面表现出特长。我们也跟企业合作，为瓷娃娃提供工作岗位，像淘宝客服之类的，他们非常珍惜这种机会。淘宝也向我们反映，他们工作都特别认真。”

When it comes to education and employment,Wang Yiou said:"Porcelain doll rare disease does not affect intelligence,They are very smart.Adult patients in the drawing/Cross-stitch hand aspects show a special skill.We also cooperation with enterprises,Provide jobs for porcelain doll,Like taobao customer service,They are very cherish this opportunity.Taobao also reflect to us,Their work is particularly serious."

　　王奕鸥还自豪地说：“今年的春晚，就是瓷娃娃做的文字直播，他们忙得都没来得及吃上一口热饭。想到能帮助更多的残疾人，他们都踊跃报名。”

Wang Yiou said proudly:"This year's Spring Festival gala,Is made of porcelain doll live text,They busy haven't had time to eat a hot meal.Think of can help more people with disabilities,They have to participate."

　　但该中心的力量毕竟有限，王奕鸥希望能有更多人了解罕见病，更多人去做志愿者，更多公司和药厂能够研发出有效的治疗药物，降低药价，也希望政府能够尽快出台罕见病的相关帮扶政策。(完)

But the center of power is limited after all,Wang Yiou hope to have more people understand the rare disease,More people to do volunteer,Companies and pharmaceutical companies to develop more effective drug treatment,Lower drug prices,Also want the government to produce the relevant support policy on rare diseases.(After the)