In this time of a viral pandemic, it is still important to keep a focus on rare diseases. Every last day of February is Rare Disease Day, the biggest day of the year for the rare disease community. Since 2009, the National Institutes of Health (NIH) Clinical Center and National Center for Advancing Translational Sciences (NCATS) have hosted Rare Disease Day at the NIH as part of the global observance to focus the world’s attention on this important subject.
The energy and passion to work together was apparent among the researchers, physicians, regulators, and most importantly, patient advocates. The day was an opportunity to collaborate, learn from one another, and celebrate the work already accomplished. Most importantly, this day enables us to reinvigorate our passion to advance treatments for rare disease patients and reminds us that the patient is the central point of our work.