Abstract Introduction Wake Up Narcolepsy (WUN) provides educational programming and support for individuals with Narcolepsy and Idiopathic Hypersomnia (IH). While clinical management focuses on pharmacotherapy, patient quality of life relies heavily on community support and symptom management strategies. This quality improvement initiative evaluated the efficacy of WUN event formats to identify structural barriers to patient engagement and optimize future support interventions. Methods A mixed-methods approach was utilized to assess a patient education and support event. Quantitative data was collected via pre- and post-event surveys (n=17 pre, n=13 post) utilizing Likert scales to assess baseline disease understanding and event satisfaction. Subsequently, thematic analysis was performed on data from two focus group sessions (n=6) comprising patients, caregivers, and governing body representatives. Primary outcomes included event logistical suitability, support group dynamics, and facilitation efficacy. Results While survey data indicated a high baseline need for community connection, post-event feedback revealed that standard conference logistics are limited by patient pathophysiology. Analysis highlighted significant logistical barriers, specifically that standard event durations without dedicated "nap rooms" caused symptom exacerbation. Regarding group dynamics, participants reported that breakout sessions exceeding 20 attendees limited patient sharing and the presence of non-patient observers impacted vulnerability. Finally, in terms of facilitation, there was a marked preference for "lived experience" leadership; peer-to-peer bridging sessions were rated highly, whereas clinically led sessions were perceived as lacking practical management insights. Conclusion Standard educational models for hypersomnolence do not account for the physiologic limits of the patient population. To succeed, support events require structural changes: strict caps on breakout groups, specific cohort segregation to address the distinct needs of narcolepsy and IH. Future initiatives must prioritize peer-led facilitation to encourage patient engagement and vulnerability. Support (if any)
Modugula et al. (2026) studied this question.