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TREND: The Online Community Making a Difference

TREND: The Online Community Making a Difference

FromVital Science


TREND: The Online Community Making a Difference

FromVital Science

ratings:
Length:
45 minutes
Released:
Nov 14, 2023
Format:
Podcast episode

Description

When Maria Picone’s daughter was diagnosed with Prader-Willi Syndrome (PWS), she turned to the internet for answers.   What she found was an online community of caregivers sharing their experiences with PWS, giving her comfort and direction with what to do about her daughter’s rare disease. It also spurred her and her husband to create TREND Community, an online platform for caregivers of rare diseases to not only share their experiences, but also make positive contributions to scientific literature.   Join us as we discuss the philosophy of TREND Community, how it transforms general discussions into real-world clinical research, how collaboration drives their progress, what’s next for TREND, and what you can do to help advance their mission.    Show Notes Trend Community - Impact Through InsightsTrend Community Report on Identifying Mental Health Challenges Experienced by Caregivers in Rare Disease Communities: A Social Media AnalysisCharles River | Rare DiseaseThe Disruptors: Innovation in Drug Discovery
Released:
Nov 14, 2023
Format:
Podcast episode

Titles in the series (48)

Life science is complicated, but its mission is simple – to create a safer, healthier future. This podcast tells the stories behind the science from the perspective of patients, scientists, employees, and advocates that have felt its impact.