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.

Jul 2023 | International Journal of Molecular Sciences
The Arduous Path to Drug Approval for the Management of Prader–Willi Syndrome: A Historical Perspective and Call to Action

Jul 2023 | National Scleroderma Foundation, Orlando, Florida July 14-16, 2023
Understanding the Mental Health Impact for People Living with Scleroderma Using Real World Evidence: A Social Media Analysis

Jun 2023 | TREND Report
Prader-Willi Syndrome Community Voice Report

Jun 2023 | The Summit on Sleep Disruption was held via a recorded online group meeting on December 14, 2020
Underrecognized Sleep Disorders Across Rare Diseases: Real-World Insights From a Patient and Caregiver Summit

Jun 2023 | Sleep 2023 Indianapolis, Indiana June 3rd-June 7th
Patient Experience with Sodium Oxybate Therapy for Narcolepsy: A Social Listening Analysis

May 2023 | European Alliance of Associations for Rheumatology, Milan, Italy, May 31st-June 3rd 2023
The Mental Health Impact of Sexual Dysfunction in Sjögren’s Disease: A Social Media Approach to Real-World Evidence

May 2023 | European Alliance of Associations for Rheumatology, Milan, Italy
Using Social Media Conversations to Understand Patient Care: Factors Driving Proactive vs Reactive Management of Gout

Feb 2023 | NIH 2023 Rare Disease Day NIH Main Campus (Natcher Conference Center) Bethesda, MD
Identifying Mental Health Challenges Experienced by Caregivers in Rare Disease Communities: A Social Media Analysis

Feb 2023 | World Symposium 2023 Orlando, Florida
Understanding Pain and Its Impact on Mental Health in Fabry Disease Using Real-World Evidence From Social Media

Feb 2023 | Advances in Sleep and Circadian Science Clearwater, FL
Understanding the Patient Experience with Sodium Oxybate Therapy for Narcolepsy