The Ice Bucket Challenge: The public sector should get ready to promptly promote the sustained development of a system of medical care for and research into rare diseases.
The Ice Bucket Challenge: The public sector should get ready to promptly promote the sustained development of a system of medical care for and research into rare diseases.
复制标题
冰桶挑战：公共部门应做好准备，迅速推动罕见病医疗和研究体系的持续发展。
DOI：
10.5582/irdr.2014.01015
复制
发表时间：
2014
影响因子：
1.3
通讯作者：
P. Song
中科院分区：
文献类型：
--
作者：
P. Song
为了提高公众对肌萎缩侧索硬化症（ALS）患者的认识并筹集慈善捐款，2014年夏天，一项名为“冰桶挑战”的慈善活动从美国的社交媒体“病毒式”传播到世界各地。挑战赛产生了明显的影响，参与者人数众多，慈善捐款不断增加。然而，这一努力也因浪费水资源、可能的安全问题以及其作为宣传噱头或哗众取宠的地位而受到批评。一些国家建立了罕见病医疗和研究体系，以保护罕见病患者的权益，但其他国家尚未建立此类体系。像“冰桶挑战”这样的活动显然不足以改善ALS或其他罕见疾病患者的困境。然而，公众对这一挑战的认识可能会推动那些缺乏罕见疾病医疗保健和研究系统的国家建立这样一个系统。公共部门应承担起推动罕见病医疗和研究体系可持续发展的重任。
In order to promote public awareness and raise charitable donations for patients with amyotrophic lateral sclerosis (ALS), a charity activity known as the "Ice Bucket Challenge" went "viral" from social media in the US to the rest of the world in the summer of 2014. The Challenge had an obvious impact with a large number of participants and increasing charity donations. However, the effort has also garnered criticism for wasting water, possible safety concerns, and its status as a publicity stunt or grandstanding. A system of medical care for and research into rare diseases has been established in some countries in order to protect the rights and interests of patients with rare diseases, but such systems have yet to be established in other countries. An activity like the "Ice Bucket Challenge" is clearly not enough to improve the plight of patients with ALS or other rare diseases. However, the public awareness attracted by this challenge may provide the impetus for those countries that lack a system of medical care for and research into rare diseases to establish such a system. The public sector should bear the responsibility for taking on the important task of promoting the sustained development of a system of medical care for and research into rare diseases.