What the Rare Disease Community Can Show Us About Coronavirus

Picture of Sefton Eisenhart
Sefton Eisenhart
Author

Even though our last blog post was about Coronavirus, given the current climate, I couldn’t see any reason to write about anything else. TREND is out of the office with every member of our team working from home, and the entire world seems to be in a tense gray area with more questions than answers. We hope that everyone in the rare disease space and beyond will be able to access the care and treatments they need in this trying time.

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. Even now, when we have the full force of the world’s governments and drug makers united to create a cure or vaccine, one still does not exist. This should not be a surprise to anyone who is familiar with the immense labor of bringing a drug to market.

At TREND, we work with people every day who had little to no support when it came to finding a treatment. Despite a lack of progress, they were not willing to settle, and they took it upon themselves to improve their own lives or the lives of the people they loved. It isn’t uncommon these days to read about parents of a rare disease patient who founded a small pharma startup to create a treatment for their children. Many of them are successful. They improve the lives of their loved ones and change the world, which is no small feat.

In times like these, it is important to remember that anyone can make a difference. The rare disease space is filled with people who do it every day.