On the first day of the conference, Flygare co-led a session on social impacts and management approaches for central disorders of hypersomnolence. During the conference’s final session, she spoke to educational, social, and behavioral support for people living with these disorders.
Julie Flygare Presents at 2023 World Sleep Congress
Social Impacts and Management Strategies of Narcolepsy and Idiopathic Hypersomnia
This course provided an update on diagnostic approaches, social impact, and management of central disorders of hypersomnolence. Flygare shared new data from an international survey Project Sleep conducted to better understand the community’s perspectives on their social experiences and unmet needs living with narcolepsy or idiopathic hypersomnia. She urged sleep clinicians to ask patients if they know other people living with the same condition, and to prescribe social support and patient advocacy organizations the same way they prescribe medications.
The course speakers included researchers, clinicians, and advocates in the hypersomnia field. Co-chair to this course, Flygare spoke alongside Dr. Kiran Maski, Dr. Lucie Barateau, Dr. David Plante, and Dr. Markus Schmidt. Learn more about the session here.
Thank you to World Sleep Society for including me as course faculty and presenter. There’s a huge role for patient advocates to play in these discussions in collaboration with researchers and clinicians!
– Julie Flygare
A Patient Centered Approach to Comprehensive Shared Care Management
Dr. Anne Marie Morse chaired the final World Sleep 2023 course, with an incredible all-female panel including Flygare, Dr. Heather Elphick, Dr. Christianne Martins Bahia, and Rising Voices speaker Juliana Angelim Neves. These powerful women gave their perspectives on managing narcolepsy across the lifespan and around the world, representing the US, UK, and Brazil.
Rising Voices speaker and Brazil native Juliana shared her story of being diagnosed with narcolepsy with cataplexy, and emphasized personalizing care through patient partnership. Learn more about the session here.
As the grand finale speaker, Flygare closed out the conference. She urged researchers and clinicians to prescribe social support and collaborate with patient organizations on their research. Commenting on the outdated cataplexy footage in use at World Sleep, she recounted her recent cataplexy experience caught on camera while at the very same conference.
Flygare’s closing words left an impact. Her emotion and passion underscored the importance of including real patients living with these conditions in research and clinical perspectives. Watch Flygare’s closing words on Instagram here.
Meeting the Brazilian Narcolepsy Organization: Abrahni
Our amazing friends of the Brazilian narcolepsy organization, Abrahni, greeted Flygare upon her arrival to Rio. Organization member Andréia Welter had a gift for Flygare: a painted image of World Narcolepsy Day balloons. This very special moment was accompanied by cataplexy for Flygare, triggered by the surprise and happy emotions.
The Brazilian narcolepsy community is led by Ana Braga and Christianne Martins Bahia. Their leadership has done so much to advance World Narcolepsy Day. With their community, they raise awareness and advocate for legal rights and treatment options in Brazil. “I’m honored to know these change-makers and fierce female leaders,” said Flygare.
World Sleep 2023 is a global scientific congress that brings together the best of sleep medicine and research. World Sleep presents a unique opportunity for sleep medicine professionals to network and learn from the best minds in sleep and medicine research. Learn more about the annual multi day World Sleep conference.