
135: Invaluable Role of Social Support in Narcolepsy and Idiopathic Hypersomnia Care
2/21/2025
0:00
16:22
Welcome to the NeurologyLive® Mind Moments® podcast. Tune in to hear leaders in neurology sound off on topics that impact your clinical practice.
In this episode, Julie Flygare, JD, president and chief executive officer of Project Sleep, shared her personal and professional insights into the critical role of social connections for patients living with narcolepsy and idiopathic hypersomnia. Drawing from her journey with narcolepsy, Flygare highlighted the challenges of isolation at diagnosis and the transformative power of peer support and advocacy. She delved into survey findings that underscore the rarity of social connections among patients and their impact on adjustment and well-being. Additionally, Flygare offered actionable recommendations for clinicians to integrate social support into practice, emphasizing the value of patient advocacy organizations and fostering meaningful connections. Above all, her inspiring perspective shed light on the intersection of community, research, and clinical care in sleep health.
Looking for more narcolepsy discussion? Check out the NeurologyLive® Narcolepsy clinical focus page.
Episode Breakdown:
The stories featured in this week's Neurology News Minute, which will give you quick updates on the following developments in neurology, are further detailed here:
Thanks for listening to the NeurologyLive® Mind Moments® podcast. To support the show, be sure to rate, review, and subscribe wherever you listen to podcasts. For more neurology news and expert-driven content, visit neurologylive.com.
In this episode, Julie Flygare, JD, president and chief executive officer of Project Sleep, shared her personal and professional insights into the critical role of social connections for patients living with narcolepsy and idiopathic hypersomnia. Drawing from her journey with narcolepsy, Flygare highlighted the challenges of isolation at diagnosis and the transformative power of peer support and advocacy. She delved into survey findings that underscore the rarity of social connections among patients and their impact on adjustment and well-being. Additionally, Flygare offered actionable recommendations for clinicians to integrate social support into practice, emphasizing the value of patient advocacy organizations and fostering meaningful connections. Above all, her inspiring perspective shed light on the intersection of community, research, and clinical care in sleep health.
Looking for more narcolepsy discussion? Check out the NeurologyLive® Narcolepsy clinical focus page.
Episode Breakdown:
- 1:00 – Challenges and importance of social connections
- 5:45 – Building a thriving community and research impact
- 7:30 – Insights from patient surveys on social support
- 10:30 – Neurology News Minute
- 12:25 – Recommendations for clinicians on social support
The stories featured in this week's Neurology News Minute, which will give you quick updates on the following developments in neurology, are further detailed here:
FDA Approves Mirdametinib for NF1-Associated Plexiform Neurofibromas in Adults and Children
FDA Approves Tablet Formulation of Risdiplam for Spinal Muscular Atrophy
Solid Reports Positive Data for SGT-003 Gene Therapy in Phase 1/2 Trial of Duchenne
Thanks for listening to the NeurologyLive® Mind Moments® podcast. To support the show, be sure to rate, review, and subscribe wherever you listen to podcasts. For more neurology news and expert-driven content, visit neurologylive.com.
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