Article | March 25, 2019

NIH Rare Disease Day: Collaboration With A Focus

Source: United BioSource LLC (UBC)

By Shazia Ahmad, Director, Patient & Physician Services, UBC

Patient Engagement

Rare Disease Day is the biggest day of the year for the rare disease community. Since 2009, theNational Institutes of Health (NIH) Clinical Centerand National Center for Advancing Translational Sciences (NCATS) have hosted Rare Disease Day at the NIH as part of the global observance. 

The energy and passion to work together was apparent among the researchers, physicians, regulators, and most importantly, patient advocates throughout the day. It was an opportunity to collaborate, learn from one another, and celebrate the work already accomplished. Most importantly, this day enables us to be reinvigorated in our passion to advance treatments for rare disease patients and reminds us that the patient is the central point of our work.

Dr. Christopher Austin, Director of NCATS, began the day saying, “this is a special day as we recognize the great work of the rare disease community and celebrate the remarkable unity of purpose among this community.”

Here is a snapshot of some key themes: