Decision makers at Bamako should consider the implications of the present misalignment of global health priorities and disease burden for health research worldwide. Funds allocated by external donors substantially differ from those allocated by WHO member states. The meeting at Bamako provides an opportunity to consider how this disparity might be addressed.

20Haemoglobinopathies are the commonest monogenic diseases, with millions of carriers and 21 patients worldwide. Online resources for haemoglobinopathies are largely divided into 22 specialised sites catering for patients, researchers and clinicians separately. However, the 23 severity, ubiquity and surprising genetic complexity of the haemoglobinopathies call for an 24 integrated website to serve as a free and comprehensive repository and tool for patients, 25scientists and health professionals alike. This paper presents the ITHANET community portal, 33world and is freely available for the public at http://www.ithanet.eu.

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Abstract. Twitter is an established social media platform valued by scholars as an open way to disseminate scientific information and to publicly discuss research results. Scientific discussions are widely viewed by the media who can then pass on information to the wider public. Here, we take the example of two 2018 earthquake-related events which were widely commented on Twitter by geoscientists: the Palu Mw 7.5 earthquake and tsunami in Indonesia and the long-duration Mayotte island seismo-volcanic crisis. We build our study on a content and contextual analysis of selected Twitter threads about the geophysical characteristics of these events. From the analysis of these two examples, we show that Twitter promotes very rapid building of knowledge – in the minutes to hours and days following an event – via an efficient exchange of information and active discussion between the scientists themselves and with the public. We discuss the advantages and potential pitfalls of this relatively novel way to make scientific information accessible to scholarly peers and to lay people. We argue that scientific discussion on Twitter breaks down the traditional ivory towers of academia, following growing trends towards open science, and may help people to understand how science is developed, and, in the case of natural/environmental hazards, to better understand their risks.

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The Human Variome Project (http://www.humanvariomeproject.org) is an international effort aiming to systematically collect and share information on all human genetic variation. The two main pillars of this effort are gene/disease‐specific databases and a network of Human Variome Project Country Nodes. The latter are nationwide efforts to document the genomic variation reported within a specific population. The development and successful operation of the Human Variome Project Country Nodes are of utmost importance to the success of Human Variome Project's aims and goals because they not only allow the genetic burden of disease to be quantified in different countries, but also provide diagnosticians and researchers access to an up‐to‐date resource that will assist them in their daily clinical practice and biomedical research, respectively. Here, we report the discussions and recommendations that resulted from the inaugural meeting of the International Confederation of Countries Advisory Council, held on 12th December 2011, during the 2011 Human Variome Project Beijing Meeting. We discuss the steps necessary to maximize the impact of the Country Node effort for developing regional and country‐specific clinical genetics resources and summarize a few well‐coordinated genetic data collection initiatives that would serve as paradigms for similar projects. Hum Mutat 33:1513–1519, 2012. © 2012 Wiley Periodicals, Inc.

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