Small Numbers, Big Concerns: Practices and Organizational Arrangements in Rare Disease Drug Repurposing

Burcu Kücükkeles (Economics ’12) has published a paper in the Academy of Management Discoveries. In this paper, “Small Numbers, Big Concerns: Practices and Organizational Arrangements in Rare Disease Drug Repurposing,” Burcu and her colleagues looked into the societal challenge of developing drugs for rare diseases (a rare disease is a condition that affects less than 200,000 people in the United States or 1 in 2,000 people in the European Union).

By studying the market and government failures in rare diseases and practices of two nonprofit organizations, Burcu and her colleagues contribute to the Agenda on the Sustainable Development Goals beyond the implications of their study to the management literature.

Burcu is currently a PhD candidate at the Chair of Strategic Management and Innovation, Department of Management, Technology, and Economics, ETH Zurich. Voice readers are welcome to email her for access to the full paper or with any questions about this research: burcuk [ at ] ethz [. ]ch

Paper Abstract

Due to their small market size, many rare diseases lack treatments. While government incentives exist for the development of drugs for rare diseases, these interventions have yielded insufficient progress. Drawing on an in-depth case study of rare diseases therapies, we explore how the practices of two nonprofit organizations allowed them to circumvent the endemic market and government failures involving positive externalities by using generic drug repurposing—i.e., seeking new therapeutic applications for existing generic drugs. Beyond elucidating the potential of generic drug repurposing for those suffering from rare diseases, our discoveries provide important insights into the mutual constitution of organizational arrangements for societal challenges and the practices they host. By showing how organizational arrangements can both reinforce and extend practices such that they enable practitioners to achieve a standard of excellence, our study advances practice theory and research on the comparative efficacy of alternative organizational arrangements for tackling societal challenges.