When the quest for good clinical data is arduous, researchers and drug developers often contract tunnel vision. Certain endpoints are established and analysis begins, the more objective, the better. But as endpoints become more specific, and researchers arrive at a clearer understanding of what they are looking for, the landscape of information they are relying on shrinks. These blinders are a necessary part of getting a treatment through rigorous approval processes, but the more they block, the...
TREND Community, RARE Revolution Magazine and RARE Youth Revolution are excited to release findings from our first Rare Youth Survey. TREND and RARE Youth Revolution invited young people to answer a short survey about where they spend time online, specifically social media....
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....
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