On Friday January 21st TREND Community launched its first Real-World Data Consortium in partnership with the gout community. Stories about the lived experiences of people
My name is Justice Faith and I am 17 years old and a senior in high school. I have…Prader-Willi syndrome,Narcolepsy with cataplexy,Scoliosis,Gastroparesis, andCentral adrenal insufficiency
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
1 in 10,000. The odds of being struck by lightning in a lifetime or finding a four-leaf clover. It also just so happens to be
In the coming months we will introduce you to some of the leaders who are amplifying their community’s voices through their partnership with TREND. This
To use a screen reader, or access links, the text is copied below: 2020 was a transformative year for TREND, the disease communities we work
For members of the rare disease community, a clinical trial can be a high stakes process. Patients are often willing to participate in anything that
There has always been a huge amount of misinformation surrounding health. From the ancient notion that many diseases were caused by “bad blood,” to traveling
When people are faced with a rare disease, the wave of emotions that follow can be tumultuous. Whether the person is a patient or a
Our CEO, Maria Picone, speaks with Karen Jagoda of the Empowered Patient Podcast about harnessing community, collaboration, and AI to improve patient and caregiver quality
