Real world evidence

Publications + Media

From community voice reports to peer-reviewed journals, the insights we glean from community conversations are making real-world impact.

Jun 2025 | TREND Report
TREND Community 2024 Impact Report

Jun 2025 | United In Hope: International Prader-Willi Syndrome Conference | Phoenix, AZ | June 24-28 2025
The Emotional Impact of Hyperphagia: Insights from the Prader-Willi Syndrome Community

Jun 2025 | SLEEP 2025 Conference | Seattle, Washington |June 8-11 2025 
Effect of Narcolepsy and Idiopathic Hypersomnia on Relationships: A Social Media Analysis

May 2025 | European Alliance of Associations for Rheumatology (EULAR) | Barcelona, Spain | June 11-14 2025 
Elevating the patient voice online: Understanding the dental experiences of Sjögren’s patients through social listening

Mar 2025 | TREND REPORT
2025 PWS Report: Gastrointestinal Issues in the PWS Community

Feb 2025 | TREND REPORT
2025 GSGA Q4 Report: The Emotional Impact of Gout: Shame and Guilt

Feb 2025 | TREND Report
2025 Pulse Report: PWS And Emotional & Behavioral Patterns

Nov 2024 | Brain Sciences
Understanding the Patient Experience with Twice-Nightly Sodium Oxybate Therapy for Narcolepsy: A Social Listening Experiment

Nov 2024 | TREND Report
2024 Pulse Report: PWS and Pain 

Nov 2024 | American College of Rheumatology | Washington, DC | November 14-19, 2024 
Using Social Listening to Understand the Patient Voice: The Daily Impacts of Sjögren’s Disease