How does undone science get funded? A bibliometric analysis linking rare diseases publications to national and European funding sources

One of the notable features of undone science debates is how formation of new interest groups becomes pivotal in mobilizing and championing emerging research on undone topics. Clearly money is one of the most important mediums through which different types of actors can support and steer scientists to work on undone topics. Yet which actors are more visible in their support for scientific research is something which has seldom been measured. This study delves into research funding in the context of rare diseases research, a topic which has evolved from the margins of medical research into a priority area articulated by many contemporary funding agencies. Rare diseases refer to conditions affecting relatively few people in a population. Given low incidences, interest groups have articulated a lack of attention within medical research compared to more common conditions. The rise to prominence of rare diseases in research funding policies is often explained in the science studies literature in terms of effective lobbying by social movements Likewise, innovative fundraising initiatives, infrastructure building, and close partnerships with research groups are other means through which interested actors have sought to build capacity for research into rare medical conditions. To date however systematic empirical evidence to compare the relative importance of different actors in funding rare disease research has not been produced. Building on interest in undone science in STS and science policy studies, our study hopes to map-out different kinds of funding actors and their influence on leading scientific research on rare diseases, by use of bibliometric tools. The approach we are developing relies on the use of Funding Acknowledgement data provided in Web of Science database.