  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.
