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The Rare Diseases Clinical Research Network and the Urea Cycle Disorders Consortium as Nested Knowledge Commons

Can Cui

Katherine J. Strandburg and Brett M. Frischmann (eds)

in Governing Knowledge Commons

Published in print:
2014
Published Online:
November 2014
ISBN:
9780199972036
eISBN:
9780199361908
Item type:
chapter
Publisher:
Oxford University Press
DOI:
10.1093/acprof:oso/9780199972036.003.0006
Subject:
Law, Intellectual Property, IT, and Media Law, Environmental and Energy Law

Information sharing, collaboration, and community building among researchers, doctors, and patients are critical to rare disease research. It is very difficult to do clinical research on rare ... More


Anorexia: A Disease Online

Elad Yom-Tov

in Crowdsourced Health: How What You Do on the Internet Will Improve Medicine

Published in print:
2016
Published Online:
September 2016
ISBN:
9780262034500
eISBN:
9780262334808
Item type:
chapter
Publisher:
The MIT Press
DOI:
10.7551/mitpress/9780262034500.003.0004
Subject:
Society and Culture, Cultural Studies

The internet serves as a unique virtual meeting place for people with rare diseases, providing advice on recovery, but also, astoundingly, on how to remain ill. The latter is especially true for ... More


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