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主题:好消息!协会筹建计划已获认可,正在等待批准

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好消息!协会筹建计划已获认可,正在等待批准  发贴心情 Post By:2003/11/9 14:30:07

神经肌肉疾病患者受关注 此文刊登在英文的《上海日报》(Shanghai Daily)上 作者蔡文君 上海的医学专家和社会工作者正在积极呼吁建立一个协会,联合国内外的专家进行医学研究、给神经肌肉疾病患者及其家属提供切实有效的帮助。中国神经肌肉疾病协会组委会,周未召开会议,要求政府、医学界、卫生当局和社会学家给予支持。 西方国家早就建立了许多官方和非官方的机构,支持帮助神经肌肉疾病患者及其家属,使患者在肌肉日渐萎缩的困难生存状况下,获得必要的关爱和帮助。中国在诊断、治疗、研究等方面与国际先进水平相差较大,患者家属和公众缺乏最基本的常识。 神经肌肉疾病有许多种类型,由于遗传基因的缺陷,使患者的肌肉组织呈进行性的退化、萎缩最终导致过早死亡,其中杜氏进行性肌营养不良最典型,目前全世界大约3000——4000人中就有一个杜氏患者,至今还没有治愈的方法。世界卫生组织已将神经肌肉疾病例入与癌症、爱滋病齐名的五大顽症之一。 陈明娟的弟弟和两个儿子都是杜氏进行性肌营养不良的患者。她说:“一旦有人患上神经肌肉疾病,这个家庭就被毁了,我感到非常无助。”陈的家庭只是成千上万个患者家庭中的一个,无助的他们强烈要求社会建立相应的机构推进医学的研究,和对患者及其家属给予全方位的支持和帮助。 神经肌肉疾病患者、协会组委会朱常青女士说:“建立协会的计划已经得到上海市残疾人联合会的认可,已上报中国残疾人联合会和国家民政部,正在等待批准。”她还说:“新建立的协会将致力于对患者和整个社会进行肌病知识的普及教育,为患者和医疗机构提供国际上最新的肌病研究进展和成果,促进肌病诊断、治疗、预防等方面的研究,我们将加强患者与患者之间,患者与专家之间,患者与自愿者之间的多边联系”朱女士说:“虽然目前协会尚未建立,但已经有近1000位患者和他们的家属参与了协会的筹备工作、翻译了许多外文资料和进行患者与患者之间的经验交流。” 朱女士说:“要了解肌病方面的信息,请大家浏览www.mdachina.org” 附原文 MD patients in focus -------------------------------------------------------------------------------- Cai Wenjun Medical experts and social workers are calling for establishing an association for the group of patients and families suffering from neurological and muscular disorders along with the national and international healthcare professionals to enhance medical research and provide patients and families with more effective help. The preparatory committee of the Neuro-Muscular Disease Association of China, or MDA-China launched a meeting over the weekend, requiring the support from the medical community, government, health authority and the society. Muscular dystrophy is a broad term that describes genetically inherited disorder of the muscles. It causes the muscles to become very weak with progressive disability and eventually loss of life. At present, the disease incidence for DMD is one in every 3,000 to 4,000 people. There is no cure for the disease in the world. World Health Organization has ranked the disease as one of the five most serious ailments in the world as well as AIDS and cancer. ``The plan for set up the association has been permitted by Shanghai Federation for Disabled. It is under the examination of the nation''s federation and then it will be given to Ministry of Civil Affairs for approval,"said Zhu Changqing, executive director of the committee and a MD patient by herself. The west has already launched wide-range of research and organized various governmental and non-governmental association to support the patients and their families to experience the tough period witness the patients getting weaker and weaker. However, China is far lagging behind on the diagnosis, treatment, research of MD. Moreover, the patients, their families and the public are lack of knowledge on the disease. Zhu said the association is to provide general education and updated information on the medical research of the disease to the Chinese patients and their families. It also aims to promote academic and medical research on the mechanisms, diagnostic prevention treatment of the disease. ``We will also enhance the communication among patients, health care professionals and scientists and to participate in national and international communities, volunteers, and any other life science organizations,"she added. ``When one person is diagnosed as MD, the family is destroyed," said Chen Minjuan, whose brother and two sons were suffers of Duchenne''''s muscular dystrophy. ``I felt so painful and hopeless sometimes." Zhu said the association is to arouse patients and their families'' confidence to compete with the disease. At present, there are 1,000-odd patients and their family members to participate in the preparation issues of the association by translating foreign documents and share their own experiences to peers. She said the information about the association is available on its website--www.MDAChina.org.
[此贴子已经被admin于2003-11-11 17:30:59编辑过]

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  发贴心情 Post By:2003/11/9 14:46:49

朱老师: 您好! 为了让更多的患者了解肌肉协会筹建的情况,我将此文翻译了出来,另外我想《给无力者力量》这篇帖子的回复已过于冗长,大家看起来不方便,同时我个人认为这篇文章比《无》文更有意义,毕竟我们走出了关键的一步,所以我就重新开了一个主题,这样作者就变成了我,Do you mind my doing it? 我想酝酿一篇关于协会的建立对我们患者的意义的帖子,写好后传给您,请您过目、修正,然后贴到网上。您看可否? 祝工作顺利!

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  发贴心情 Post By:2003/11/9 16:56:15

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  发贴心情 Post By:2003/11/9 19:20:01

LZX 老师总是那么尽责尽力,可谓是我们这些版主的楷模了

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  发贴心情 Post By:2003/11/10 8:04:31

真是一件好事。

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  发贴心情 Post By:2003/11/10 11:32:18

感谢朱老师和lzx版主。这真是一个振奋人心的好消息,会员们一定要相互转告!

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  发贴心情 Post By:2003/11/11 1:11:06

是好消息,但能不能得到普及呢?

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  发贴心情 Post By:2003/11/12 17:01:14

期盼协会早日成立

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  发贴心情 Post By:2003/11/12 20:02:58

以下是引用电脑侠客在2003-11-10 8:04:31的发言: 真是一件好事。

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  发贴心情 Post By:2003/11/14 16:16:36

MDACHINA 大事记 http://www.mdachina.org/memorabilia1.asp

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