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 They think the term is outdated and doesn’t do enough to represent their experience.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...
A growing distrust of institutions has coalesced with an unprecedented amount of information, giving rise to a culture of misinformation....
In the world of rare disease, many of the biggest advancements occur in large part due to the work of the parents of patients....
Quarantining in place has left the world facing a lot of challenges, but for members of the rare disease community, the situation is often more dire....
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....
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