Reading between the lines…TREND Community Voice Report World Narcolepsy Day 2021 was a day to celebrate. Hundreds of people with narcolepsy and their support members shared their stories of struggles, strength, and sleep. Many spoke out for the first time publicly. For me, the strength it takes to speak openly about living with narcolepsy comes from a desire to raise awareness and reduce time to diagnosis. I feel comfortable publicly sharing vignettes about my life with narcolepsy, yet I rese...
For those using alternative metabolic diets as weight-loss solutions, this isn’t the end of the world. For those using ketosis as a treatment for a neurological disorder, a slip up can be detrimental....
TREND Community was founded by two devoted caregivers, so we know about the commitment that comes with the role....
Building a relationship is not a black-and-white matter. There are a lot of factors that need to fall into place. Most importantly—there needs to be mutual trust....
With so much effort devoted to the research process, stakeholders might not know about a discovery made by another community....
CRISPR has long been a topic of conversation and hope throughout the rare disease community because of its potential to help prevent certain inherited diseases. The two scientists are being awarded specifically for their work on the CRISPR/Cas9 genetic scissors....
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