Navigating Family Building in Women with Narcolepsy
July 20, 2026 @ 9:00 am - 4:00 pm EDT
Narcolepsy is a chronic neurological disorder of the sleep-wake cycle, characterized by persistent and excessive daytime sleepiness, an ability to regulate sleep-wake cycles, and, in some cases, cataplexy. Narcolepsy can have widespread impacts on daily life, including challenges with employment, school, and relationships. While there are no sex differences in the rates or symptoms of narcolepsy, women are more likely to experience a long pathway to an accurate diagnosis, up to 12 years longer than men. Women living with narcolepsy also face unique challenges throughout their lifespan, including when considering pregnancy. Many women living with narcolepsy report concerns about medication safety during pregnancy and breastfeeding and dissatisfaction with preconception clinical guidance, risk communication, and symptom management strategies. There are also research and care gaps leading to variability in treatment approaches and limited shared decision-making with patients. Building awareness of knowledge gaps while providing education and resources for women living with narcolepsy can offer necessary opportunities to make informed decisions about treatment and family building.
The Society for Women’s Health Research (SWHR) is convening an interdisciplinary Narcolepsy and Family Building Working Group of researchers, health care providers, and patient advocates for a closed convening in July 2026. During the convening, the Working Group will discuss family building for women living with narcolepsy with an emphasis on gaps in research, care, and practice.
Objectives
The objectives of the roundtable are to:
- Review the state of the science and explore strategies to address knowledge gaps related to the research, treatment, and care for women with narcolepsy pre-conception and during pregnancy
- Identify opportunities to address unmet needs around pre-conception clinical guidance, risk communication, symptom management, and maternal-fetal outcomes
- Promote patient empowerment in family building with narcolepsy through shared decision-making and patient-provider interactions
- Develop materials to improve awareness and address gaps in this field for women with narcolepsy, health care providers, and policy stakeholders
Working Group Participants
Tammy Anderson, Executive Director, Wake Up Narcolepsy
Emily Clegg Barker, PhD, Adjunct Instructor, Case Western Reserve University School of Medicine
Kelsey Biddle, MD, PGY1 Psychiatry Resident, Brigham & Women’s Hospital
Margaret Blattner, PhD, MD, Senior Associate Consultant, Mayo Clinic
Ginna Freehling, Senior Manager, Clinical Operations, RayzeBio Therapeutics
Dayna Johnson, PhD, MPH, MSW, MS, FAHA, Associate Professor, Department of Epidemiology, Emory University Rollins School of Public Health
Katie Sharkey, MD, PhD, FAASM, Professor of Psychiatry and Internal Medicine, Wake Forest School of Medicine
Anita Valanju Shelgikar, MD, MHPE, Professor of Neurology, University of Michigan
Christine Won, MD, MSc, Medical Director, Yale Center for Sleep Medicine, Yale University
Sponsor
Support for this educational program has been provided by Alkermes, Inc. SWHR maintains independence and editorial control over program development, content, and work products.