DST Centre for Policy Research

Abstract Rare diseases (RDs) are diseases that occur infrequently and affect a small fraction of the population. Although these diseases individually affect small number of people, together they affect 400 million people globally at any given time. In India, where resources are scarce, healthcare infrastructure and policy framework are focused on mitigating diseases that affect many people. Further, the level of RD awareness among healthcare professionals, researchers, and general public is considerably low. As a result, many cases of RDs remain unreported, undiagnosed, and untreated. To frame policies regarding RDs, it is crucial to understand the current level of RD awareness among healthcare professional and researchers, as they are key stakeholders in diagnosis, treatment, policy making, and drug development. We conducted an exploratory survey to understand the current level of RD awareness among healthcare professionals and researchers based on identification of an RD, time for diagnosis, treatment options, and relationship with family history and geographic location. We noted that our respondents have considerably low level of RD awareness. They correctly identified the importance of family history but failed to realize the association with geographic location. After presenting the survey findings, we have made recommendation to improve RD awareness in India. Our findings will be helpful to design awareness campaigns and frame relevant policies.

Makerspaces are shared workshops for the public to design, innovate and prototype. These spaces are primarily located in the urban regions and provide access to 'high-tech' and traditional low-tech tools needed for innovation design. Though makerspaces are a western phenomenon, their emergence in India can be traced to the early decade of the 2010s. In this paper, we study the urban makerspaces in Bengaluru, India, to explore its distinctions from the western conceptualisation. The city of Bengaluru is regarded as the technology and innovation capital of India and is also home to several makerspaces. We employ a qualitative research design and collect data through primary and secondary means. The findings point out the complexities and multifaceted nature of makerspaces in terms of their mode of operation, location and profile of actors/members, motives of operating and functions performed. The makerspaces in Bengaluru are predominantly informal spaces of innovation nested within or financed by formal institutions, such as enterprises, universities and government funding agencies.