Article: A new collaboration demonstrates how tech can help understand rare diseases

Cures, Open Health

A new collaboration demonstrates how tech can help understand rare diseases

The Linux Foundation’s open source software will be used to develop gene therapies for rare genetic diseases in the newly announced RareCamp project. Gene therapies for rare genetic diseases is the goal of the newly founded RareCamp software project from the collaboration of The Linux Foundation and the OpenTreatments Foundation.

There are 400 million patients worldwide affected by more than 7,000 rare diseases, yet treatments for rare genetic diseases are an underserved area. More than 95% of rare diseases do not have an approved treatment, and new treatments are estimated to cost more than $1 billion.

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Article: The Value of Open Governance: Adaptive learning and development

Open Governance, Politics, Standards

The Value of Open Governance: Adaptive learning and development

Open governance is governance that puts into practice principles of transparency, participation and accountability. Proponents of open governance tend to make their case on the basis of two sets of arguments. Normative, or intrinsic value, arguments hold that open governance is a good thing in itself.

The idea here is that people have a right to open governance, regardless of its outcomes. Instrumental, or extrinsic value, arguments make the case that open governance is important because it contributes to better outcomes; less corruption, lower poverty, greater prosperity, for instance.

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