While research on sleep in rare disease is limited, TREND’s social listening is finding issues related to sleep to be the topic of many conversations in our rare disease communities....
Our newest Community Voice Report is here. Thank you to everyone who participated. We hope that this work will help accelerate the pace of treatment discovery. ...
As of late, it has been hard for us to write about anything other than COVID-19. The pandemic is unprecedented, and for any healthcare-related organization the virus has had an impact. TREND is no exception. But we specialize in rare and underserved diseases, and even though the world is united in its quest for a COVID vaccine, we can’t forget the daily battle so many rare disease patients are facing along with the lack of attention their illnesses receive. This is especially true for ultra-rare...
Our newest Community Voice Report was made with the Global Pericarditis Support Group. Thank you to everyone who participated....
In the wake of the COVID-19 crisis, different entities around the world are trying to minimize the amount of time it takes to get critical information. One promising endeavor is the COVID-19 Evidence Accelerator....
In February 2020, we presented a poster at NIH Day during Rare Disease Week on Capitol Hill titled: Insights From Closed Social Networks Advance the Understanding of Commonalities Between Rare Diseases. ...
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