In a medical context, the word “patient” conjures different images and emotions for every person that uses it. For some, it signifies bravery in the face of vulnerability. For others, the origin of the word (from Latin, patientem, meaning suffering) is enough to make them feel it is pejorative. They think the term is outdated and doesn’t do enough to represent their experience. In the world of rare diseases, those afflicted with illness are rarely in a position to patiently wait for the healthc
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.