Literature DB >> 25364651

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.

Peipei Song1.   

Abstract

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.

Entities:  

Keywords:  Amyotrophic lateral sclerosis; health insurance system; orphan drugs; rare diseases

Year:  2014        PMID: 25364651      PMCID: PMC4214244          DOI: 10.5582/irdr.2014.01015

Source DB:  PubMed          Journal:  Intractable Rare Dis Res        ISSN: 2186-3644


  3 in total

1.  Intractable and rare diseases research in Asia.

Authors:  Peipei Song; Jianjun Gao; Yoshinori Inagaki; Norihiro Kokudo; Wei Tang
Journal:  Biosci Trends       Date:  2012-04       Impact factor: 2.400

Review 2.  Rare diseases, orphan drugs, and their regulation in Asia: Current status and future perspectives.

Authors:  Peipei Song; Jianjun Gao; Yoshinori Inagaki; Norihiro Kokudo; Wei Tang
Journal:  Intractable Rare Dis Res       Date:  2012-02

3.  Hopes for intractable and rare diseases research.

Authors:  Wei Tang
Journal:  Intractable Rare Dis Res       Date:  2013-02
  3 in total
  5 in total

1.  A Cross-Sectional Review of Cervical Cancer Messages on Twitter During Cervical Cancer Awareness Month.

Authors:  Deanna Teoh; Rida Shaikh; Rachel Isaksson Vogel; Taylor Zoellner; Linda Carson; Shalini Kulasingam; Emil Lou
Journal:  J Low Genit Tract Dis       Date:  2018-01       Impact factor: 1.925

2.  Hydroxychloroquine and COVID-19: critiquing the impact of disease public profile on policy and clinical decision-making.

Authors:  Yves S J Aquino; Nicolo Cabrera
Journal:  J Med Ethics       Date:  2020-07-09       Impact factor: 2.903

3.  Factors Contributing to Adolescents' and Young Adults' Participation in Web-Based Challenges: Survey Study.

Authors:  Amro Khasawneh; Kapil Chalil Madathil; Heidi Zinzow; Patrick Rosopa; Gitanjali Natarajan; Krishnashree Achuthan; Meera Narasimhan
Journal:  JMIR Pediatr Parent       Date:  2021-02-17

Review 4.  Considerations on the concept, definition, and diagnosis of amyotrophic lateral sclerosis.

Authors:  Ren-Shi Xu; Min Yuan
Journal:  Neural Regen Res       Date:  2021-09       Impact factor: 5.135

Review 5.  Repurposing NGO data for better research outcomes: a scoping review of the use and secondary analysis of NGO data in health policy and systems research.

Authors:  Sarah C Masefield; Alice Megaw; Matt Barlow; Piran C L White; Henrice Altink; Jean Grugel
Journal:  Health Res Policy Syst       Date:  2020-06-08
  5 in total

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