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Narcolepsy Program Roundtable: The Impact of Narcolepsy on Women’s Health Across the Lifespan

March 31 @ 10:00 am - 5:00 pm EDT

Narcolepsy is a chronic neurological disorder of the sleep-wake cycle, characterized by excessive daytime sleepiness, nighttime sleep disturbances, and REM sleep-related phenomena that intrude into wakefulness. Narcolepsy is categorized into two types – NT1 associated with cataplexy (sudden loss of muscle tone during wakefulness) and NT2 without muscle weakness.

Narcolepsy can be a debilitating chronic condition with widespread impacts on daily life, including challenges with employment, school, and relationships, particularly for women acting as the primary family caregiver. Difficulty maintaining treatment regimens and unpleasant side effects pose barriers to effective symptom management. Although women and men are about equally affected and report similar narcolepsy-related symptoms, women are more likely to experience an extremely long pathway to an accurate diagnosis, up to 12 years longer than men. Many women with narcolepsy also face challenges during pregnancy and lactation, often stopping medication near conception and suffering from additional symptoms as a result. Building awareness about narcolepsy symptoms and treatment options among both patients and providers will offer women opportunities to identify symptoms earlier, reduce the delay in obtaining appropriate care, and make informed decisions about treatment throughout the life course.

SWHR convened an interdisciplinary working group of health care providers, researchers, patients/patient advocates, and policy leaders for a closed, roundtable meeting on March 31, 2022. During the roundtable, the SWHR Narcolepsy Working Group discussed scientific and policy issues around narcolepsy in women, including strategies for better symptom management and how to improve access to treatments and care.

Details

Date:
March 31
Time:
10:00 am - 5:00 pm EDT
Event Categories:
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Organizer

SWHR

Objectives

The objectives of the SWHR Narcolepsy Roundtable are to:

  • Review the science and health care landscape and develop strategies to address knowledge gaps and unmet needs related to the research, diagnosis, and treatment of narcolepsy in women across the lifespan;
  • Identify opportunities to leverage innovation and increase access to equitable care, and reduce disparities and disease burden for women living with narcolepsy;
  • Promote science-based health care policies around narcolepsy to improve patient outcomes; and
  • Develop materials to expand education, raise awareness, and remove stigma about narcolepsy for women, health care providers, employers, and policy stakeholders.

Roundtable Participants

Christina Brundage, Patient Advisory and Advocacy Council, Hypersomnia Foundation

Monica Gow, MPA, Founder and Executive Director, Wake Up Narcolepsy

Michael A. Grandner, PhD, Associate Professor, Department of Psychiatry, University of Arizona

Astrid Homan, MBA, Freelance Translator and Patient Advocate

Vidya Krishnan, MD, MHS, Associate Professor, School of Medicine, Case Western Reserve University, MetroHealth Campus

Clete A. Kushida, MD, PhD, Professor of Psychiatry and Behavioral Sciences, Stanford University

Anne Marie Morse, DO, Director, Child Neurology and Pediatric Sleep Medicine, Geisinger Commonwealth School of Medicine

Jason Ong, PhD, Director of Behavioral Sleep Medicine, Nox Health

Quentin Rodney Regestein, MD, Associate Professor of Psychiatry, Harvard Medical School

David Shaha, MD, Sleep Lab Director, University of Iowa Hospitals and Clinics

Tove Maren Stakkestad, Writer of Mama in the Now, and Patient Advocate

Alyssa Walker, Patient Advocate

Christine Won, MD, MSc, BA, Medical Director, Yale Centers for Sleep Medicine

Rochelle Zak, MD, Associate Professor, Medicine, University of California, San Francisco Health

Sponsor

SWHR’s Narcolepsy Program is supported by an educational sponsorship from Avadel Pharmaceuticals. SWHR maintains editorial control and independence over educational content.