Intractable Rare Dis Res. 2014;3(3):94-96. (DOI: 10.5582/irdr.2014.01015)

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.

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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.

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