新闻
404 Not Found

404 Not Found

Sorry for the inconvenience.
Please report this message and include the following information to us.
Thank you very much!

URL: http://3g.china.com:8080/act/news/11038989/20170910/31346609.html
Server: cms-8-252
Date: 2024/03/29 23:38:39

Powered by China
China

中国罕见病高峰论坛首次在华举办

2017-09-10 18:12:37   中国经济网

经济日报-中国经济网北京9月10日讯(陈颐)为期三天的第十二届国际罕见病与孤儿药大会(ICORD)暨第六届中国罕见病高峰论坛9月10日在北京闭幕。作为罕见病领域内最大规模的国际会议,本次大会是国际罕见病与孤儿药大会第一次在中国举办,并由国际罕见病与孤儿药大会(ICORD)、罕见病发展中心(CORD)、北京协和医院共同举办。

为应对中国及亚太地区罕见病领域面临的诸多挑战,作为专注为罕见病患者服务的全球领先生物科技公司,夏尔在此次国际罕见病与孤儿药大会上,举办了一场卫星会议和两场分组会议,并邀请到多位专家发表精彩演讲,吸引了超过500名来自世界各地的代表参会,其中一半以上为医生及患者组织代表。

夏尔全球医学事务总监Martina Muttk博士表示:“我们现今对罕见病的了解还只是冰山一角,目前已知的罕见病中仅有5%有药可医。提高罕见病诊断和治疗水平迫在眉睫。为此,夏尔将把握重大机遇,通过持续的研发创新,推动罕见病产品线的不断丰富。事实上,目前夏尔超过75%的临床项目都针对罕见病适应症,并覆盖临床研发的各个阶段。多年来,夏尔始终践行对罕见病患者的承诺,致力于提高创新疗法在罕见病患者群体中的可及性。”

虽然在亚太地区已有多项举措以推动罕见病的诊断和治疗,但罕见病的认知水平仍不容乐观。据估计,仅中国就有超过1600万罕见病患者,且每年新出生的患者超过20万。为了提高人们对罕见病的认知并普及罕见病相关知识,当务之急是在中国建立相关的患者登记中心/组织机构,确立监管框架,并出台医保政策。这将有助于中国更加有力地应对与罕见病相关的医疗和社会负担。

近期,中国已在这一方面取得重大进展,即国家食品药品监督管理局宣布将加速罕见病创新药物在中国的审批流程,包括鼓励罕见病研发力度,首份国家罕见病名录也将由国家卫生和计划生育委员会规划出台。对此,罕见病发展中心(CORD)创始人兼主任黄如方表示:“我们需要与各领域利益相关方,尤其是像夏尔这样的合作伙伴携手努力,才能不断改善罕见病患者的诊疗局面。这是一项需要我们为之不懈追求的事业。此次在中国举办的2017年国际罕见病与孤儿药大会将成为一项里程碑,引领业界交流专业信息、最佳实践,并转变全国各界对罕见病的认知。”

北京协和医院变态反应科主任医师支玉香教授表示:“鉴于遗传性血管性水肿的低发病率和非特异性症状,这种疾病诊断的最大障碍是初始识别。由于频繁急性发作,遗传性血管性水肿会严重影响患者的生活质量,甚至危及生命, 造成沉重的身心负担,耽误患者的正常工作与学习。因此,管理这些症状并采取按需治疗方式势在必行。本次大会搭建了一个很好的国际交流平台,通过与欧洲和澳大利亚医生及患者交流,我们将可更好地帮助中国患者管理遗传性血管性水肿。”

作为罕见疾病领域的专家,夏尔借助70多年的创新经验,可提供领先的产品组合。通过在推动早期诊断、早期预防和个性化治疗等方面的努力,始终致力于提高治疗标准。目前,夏尔已在全球27个国家和地区开展血友病患者协会合作项目,助力确诊3万名新病例。

夏尔中国总经理丛凡表示:“这些疾病虽然罕见,但诊断和治疗方法不应罕见。在夏尔,我们长期以来肩负着独特的责任,致力于为缺医少药的患者群体提供支持。现在正是在中国采取行动以应对罕见病的最佳时机,夏尔已经为此做好充分准备。”

404 Not Found

404 Not Found

Sorry for the inconvenience.
Please report this message and include the following information to us.
Thank you very much!

URL: http://3g.china.com:8080/act/news/11038989/20170910/31346609.html
Server: cms-8-252
Date: 2024/03/29 23:38:39

Powered by China
China
404 Not Found

404 Not Found

Sorry for the inconvenience.
Please report this message and include the following information to us.
Thank you very much!

URL: http://3g.china.com:8080/act/news/11038989/20170910/31346609.html
Server: cms-8-252
Date: 2024/03/29 23:38:39

Powered by China
China

相关阅读

404 Not Found

404 Not Found

Sorry for the inconvenience.
Please report this message and include the following information to us.
Thank you very much!

URL: http://3g.china.com:8080/act/news/11038989/20170910/31346609.html
Server: cms-8-252
Date: 2024/03/29 23:38:39

Powered by China
China
404 Not Found

404 Not Found

Sorry for the inconvenience.
Please report this message and include the following information to us.
Thank you very much!

URL: http://3g.china.com:8080/act/news/11038989/20170910/31346609.html
Server: cms-8-252
Date: 2024/03/29 23:38:39

Powered by China
China
404 Not Found

404 Not Found

Sorry for the inconvenience.
Please report this message and include the following information to us.
Thank you very much!

URL: http://3g.china.com:8080/act/news/11038989/20170910/31346609.html
Server: cms-8-252
Date: 2024/03/29 23:38:39

Powered by China
China
分享到:
0 0
404 Not Found

404 Not Found

Sorry for the inconvenience.
Please report this message and include the following information to us.
Thank you very much!

URL: http://3g.china.com:8080/act/news/11038989/20170910/31346609.html
Server: cms-8-252
Date: 2024/03/29 23:38:39

Powered by China
China
404 Not Found

404 Not Found

Sorry for the inconvenience.
Please report this message and include the following information to us.
Thank you very much!

URL: http://3g.china.com:8080/act/news/11038989/20170910/31346609.html
Server: cms-8-252
Date: 2024/03/29 23:38:39

Powered by China
China

美图推荐

404 Not Found

404 Not Found

Sorry for the inconvenience.
Please report this message and include the following information to us.
Thank you very much!

URL: http://3g.china.com:8080/act/news/11038989/20170910/31346609.html
Server: cms-8-252
Date: 2024/03/29 23:38:39

Powered by China
China
404 Not Found

404 Not Found

Sorry for the inconvenience.
Please report this message and include the following information to us.
Thank you very much!

URL: http://3g.china.com:8080/act/news/11038989/20170910/31346609.html
Server: cms-8-252
Date: 2024/03/29 23:38:39

Powered by China
China
404 Not Found

404 Not Found

Sorry for the inconvenience.
Please report this message and include the following information to us.
Thank you very much!

URL: http://3g.china.com:8080/act/news/11038989/20170910/31346609.html
Server: cms-8-252
Date: 2024/03/29 23:38:39

Powered by China
China
404 Not Found

404 Not Found

Sorry for the inconvenience.
Please report this message and include the following information to us.
Thank you very much!

URL: http://3g.china.com:8080/act/news/11038989/20170910/31346609.html
Server: cms-8-252
Date: 2024/03/29 23:38:39

Powered by China
China

为您推荐

加载更多>>
404 Not Found

404 Not Found

Sorry for the inconvenience.
Please report this message and include the following information to us.
Thank you very much!

URL: http://3g.china.com:8080/act/news/11038989/20170910/31346609.html
Server: cms-8-252
Date: 2024/03/29 23:38:39

Powered by China
China
404 Not Found

404 Not Found

Sorry for the inconvenience.
Please report this message and include the following information to us.
Thank you very much!

URL: http://3g.china.com:8080/act/news/11038989/20170910/31346609.html
Server: cms-8-252
Date: 2024/03/29 23:38:39

Powered by China
China
404 Not Found

404 Not Found

Sorry for the inconvenience.
Please report this message and include the following information to us.
Thank you very much!

URL: http://3g.china.com:8080/act/news/11038989/20170910/31346609.html
Server: cms-8-252
Date: 2024/03/29 23:38:39

Powered by China
China