TREND uses social media conversations to understand the impacts of rare disease on communities. We can use these same techniques to understand the impact of COVID-19 on people and we can do so without asking them to do anything more than they are already doing.
We still don’t know enough about COVID-19. We don’t have a set of drugs or therapies. We are only just beginning to identify why it affects people so differently. At the moment, it is like a rare disease; we haven’t seen enough cases to have a clear view of how it works and how to best treat it.
One thing that isn’t getting enough attention is how the pandemic is directly impacting the lives of rare disease patients. In many cases they are the people most at risk when it comes to the virus. Having or being treated for a rare disease leaves many of these patients immunocompromised.
This pandemic has shed light on many aspects of healthcare, and while much of it has been unsettling, one thing is becoming clear to the general public—the path to treatments is an extremely complex one.