Kevin Flesch – Journey with FSGS
Matthew Horsnell
November 7, 2022
When I was nine years old, I woke up one day with heavy swelling in my face. At first it was sporadic, but when fourth
Blog Category:
Real World Evidence
TREND at World Orphan Drug Conference USA 2022
Matthew Horsnell
July 7, 2022
TREND Community is honored to present two posters at the World Orphan Drug Congress USA 2022 on July 11-13 in Boston, MA. These two posters*
Hypoxic Ischemic Encephalopathy Report
Matthew Horsnell
April 29, 2022
As a parent, the months before the birth of a child can be full of wonder, excitement, and apprehension. The health of the mother and
“Sleep in Rare” Evidence Accelerator Kick-Off World Sleep 2022
Maria Picone
March 2, 2022
To kick off our “Sleep in Rare” Evidence Accelerator, TREND Community presented our poster titled “Extracting Real-World Insights From Social Media to Understand Narcolepsy and
Gout Real World Consortium
Matthew Horsnell
January 28, 2022
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
Amplifying Patient Voices Using the Rapid Method of Social Listening: Pericarditis
Maria Picone
January 3, 2022
In October 2021, TREND Community, in collaboration with Kiniksa Pharmaceuticals Corp and Dr. Chadi Alraies (Detroit Medical Center) presented a poster at the NORD Rare
TREND’s 2021 Annual Letter and Citizen Scientist Announcement
Maria Picone
January 3, 2022
Dear Community, Despite some setbacks, disappointments, and unforeseen challenges, 2021 was a year of unprecedented growth for TREND. To kick-off off the year, we matched
Reading Between the Lines
Maria Picone
September 24, 2021
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
Narcolepsy Community Voice Report
Maria Picone
September 22, 2021
Narcolepsy is a rare disease that affects 3 million people worldwide. People living with narcolepsy can experience significant disruptions in their daily routines that make
How to Turn Your Community’s Conversations into Real-world Evidence
Maria Picone
July 29, 2021
TREND Community believes that valuable and actionable insights can be gained from the community perspectives and life experiences shared throughout social media, especially when traditional