Being A Person With Narcolepsy. Being Matt Horsnell.The sounds of dumbbells crashing and treadmills whirring served as the background track as the doctor confirmed my diagnosis. Sleep had…Sep 9, 2021Sep 9, 2021
1 in 10,000The odds of being struck by lightning in a lifetime or finding a four-leaf clover. It also just so happens to be the same odds as being…Sep 7, 2021Sep 7, 2021
Analytics and the Future of Disease UnderstandingIn 2021, big data play a role in nearly everything we do. We might not know it, but companies around the world are collecting data around…Jan 7, 2021Jan 7, 2021
TREND Community and RARE Revolution Magazine Release Findings of First Survey: Capturing Rare…TREND Community, RARE Revolution Magazine and RARE Youth Revolution are excited to release findings from our first Rare Youth Survey.Dec 3, 2020Dec 3, 2020
Cross-Condition AnalysisWhen a rare disease community is working to find a treatment, it’s easy to fall victim to tunnel vision. Multiple parties are always…Nov 20, 2020Nov 20, 2020
The Back and Forth of the ACAImplementing any formative policy is arduous. Call it partisan politics, call it division, the fact of the matter is enacting change is…Nov 13, 2020Nov 13, 2020
CRISPR, a Nobel Prize, and the Future of Gene EditingThis year’s Nobel Prize in Chemistry was awarded to two scientists, Dr. Emmanuelle Charpentier of the Max Planck Unit for the Science of…Oct 15, 2020Oct 15, 2020
TREND Community Releases New Metastatic Breast Cancer Community Voice ReportOur newest Community Voice Report (CVR) is filled with insights. Thank you to BreastCancer.org.Sep 25, 2020Sep 25, 2020
