Sabina Kineen – Journey with Fabry
My rare disease diagnostic journey was, in some ways, like many others. In other ways, it was very unique. My father was the first in
My rare disease diagnostic journey was, in some ways, like many others. In other ways, it was very unique. My father was the first in
Tell your story. Shed light on rare disease. TREND Community is a digital health analytics company with a bold vision to revolutionize the world’s understanding
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
If you pay attention to ebb and flow of nutrition fads, then you have probably heard about the keto diet. According to the Harvard School
Behind many rare disease patients are caregivers who lend support. Some people are lucky enough to have a wide support system, with friends, family, and
When TREND creates a Community Voice Report (CVR) there are dozens of preliminary steps that have to be completed before we can start our analysis.
When a rare disease community is working to find a treatment, it’s easy to fall victim to tunnel vision. Multiple parties are always involved. Coordination
This year’s Nobel Prize in Chemistry was awarded to two scientists, Dr. Emmanuelle Charpentier of the Max Planck Unit for the Science of Pathogens in
In a medical context, the word “patient” conjures different images and emotions for every person that uses it. For some, it signifies bravery in the
Consensus is hard to come by in 2020. A growing distrust of institutions has coalesced with an unprecedented amount of information, giving rise to a