NEXT 2021 Report: A Time for Resilience and Ingenuity

The COVID-19 pandemic has had deep reverberations on daily life throughout the world and taken a staggering toll in terms of human life. The pandemic has also had a profound and lasting impact on the world of rare disease. It disrupted research, halted clinical trials, and upended the delivery of care and the daily lives of people with rare conditions. Though much of this has had a negative effect on the rare disease community— delaying scientific progress, derailing fundraising efforts, and exacerbating isolation while forestalling access to care—there have also been some positive developments. The pandemic has accelerated the use of technology for remote care, advanced efforts to decentralize clinical trials, and demonstrated the benefits of tearing down barriers to collaboration and data sharing. In NEXT 2021: A Time for Resilience and Ingenuity, Global Genes reviews the major developments of 2020 and looks ahead to trends that are reshaping the rare disease landscape.