Narcolepsy in 2020: World Narcolepsy Day Expert Panel

In Project Sleep’s feature event for World Narcolepsy Day 2020, a panel of leading narcolepsy clinicians and researchers spoke to our President & CEO, Julie Flygare about  narcolepsy research progress and novel drug development underway. The panel, which represented five continents around the world, also addressed the challenges and barriers in providing care to people with narcolepsy in different parts of the world, especially during the COVID-19 global pandemic.

The narcolepsy expert panel included:

  • David Cunnington, MD, Melbourne Sleep Disorders Centre, Australia
  • Yves Dauvilliers, MD, PhD, University of Montpellier, France
  • Yu-shu Huang, MD, Chang Gung Memorial Hospital and University, Taiwan
  • Christianne Martins Bahia, MD, Rio de Janeiro State University, Brazil
  • Emmanuel Mignot, MD, PhD, Stanford University, USA
  • Giuseppe Plazzi, MD, PhD, University of Bologna, Italy

First, each expert provided an update followed by a wonderful group discussion. Please watch and share these videos!

Dr. Emmanuel Mignot’s 2020 Narcolepsy Community Update:

This is a very exciting year for people with narcolepsy, perhaps the most exciting year in a long time.” — Dr. Emmanuel Mignot

Emmanuel Mignot, MD, PhD, Stanford University, USA, kicked off the World Narcolepsy Day broadcast sharing his enthusiasm about the novel orexin/hypocretin agonist treatment under development and currently in clinical trials across the United States and a few other places internationally. Participating in clinical trials is a critical way for people with narcolepsy to help to advance research. Search for clinical trials near you by searching for “narcolepsy” on clinicaltrials.gov.

Dr. David Cunnington’s Update from Australia:

People with narcolepsy can drive research forward and move barriers aside.” — Dr. David Cunnington

David Cunnington, MD, Melbourne Sleep Disorders Centre, Australia, was the second panelist to share updates. In this video, he highlights the importance of patient groups in moving clinical trials forward and advocating for new treatment options in Australia. Shout out to Narcolepsy Australia!

Dr. Yu-Shu Huang’s Update from Taiwan:

I think we should collect more data….probably we should cooperate with other countries. Does anybody have an interest in doing this study together?” — Dr. Yu-shu Huang

Yu-shu Huang, MD, Chang Gung Memorial Hospital and University, Taiwan, was our third panelist. Here, she talks about machine learning research and how narcolepsy research has stopped in Taiwan due to their strict, but successful, response to COVID-19.

Dr. Giuseppe Plazzi’s Update from Italy:

Without the patient organization, it would be impossible to do all these important things.” — Dr. Giuseppe Plazzi

Our fourth panelist, Giuseppe Plazzi, MD, PhD, University of Bologna, Italy, talked about the success of ongoing research projects in Italy despite major changes and challenges due to the COVID-19 outbreak in Italy. These projects include collaborations with the terrific Italian narcolepsy advocacy organization AIN – Associazione Italiana Narcolessia e Ipersonnia Idiopatica.

Dr. Yves Dauvilliers’ Update from France:

We need to think about personalized medicine, and I think we need to go there.” — Dr. Yves Dauvilliers

Our fifth panelist, Yves Dauvilliers, MD, PhD, University of Montpellier, France emphasized the importance of personalized medicine, as several new treatment options will soon be on the market. He also talks about his lab’s initiative to streamline the diagnosis of type 2 narcolepsy without cataplexy & idiopathic hypersomnia. On COVID, Dr. Dauvilliers comments that this year his lab has seen fewer patients than usual, and that quarantine/confinement may affect each individual differently.

Dr. Christianne Martins Bahia’s Update from Brazil:

The Brazilian Narcolepsy Association has contributed greatly to awareness.” — Dr. Christianne Martins Bahia

Our sixth panelist, Christianne Martins Bahia, MD, Rio de Janeiro State University, Brazil, shared about her groundbreaking efforts to establish a center for sleep disorders in Brazil. She also shares about her close relationship with the patient community and about how a special patient of hers established the Brazilian Association of Narcolepsy and Idiopathic Hypersomnia in 2019! Dr. Bahia spoke to the difficulty of conducting research & living with narcolepsy in Brazil. She also talks about working with the patient organization to raise awareness and advocate for people with narcolepsy.

International Narcolepsy Expert Panel Q&A Discussion:

In this final video, the experts discuss the possibilities of narcolepsy resulting from COVID-19, vaccinations for the seasonal flu & for COVID, and narcolepsy awareness around the world.

Thank you for tuning in!

Viewers tuned in from around the world from countries including: Portugal, Sweden, USA, Luxembourg, Canada, the Philippines, Australia, Ireland, Brazil, UK, Belgium, Japan and Italy. Thank you for your incredible engagement!

Special Thanks!

Huge thank you to our Expert Panel for their insights and their hard work to improve outcomes for people with narcolepsy.
Special thanks to Taylor Dillon who volunteered with Project Sleep to help us add the correct subtitles to these videos. This hard work, often behind-the-scenes by kind and generous people like Taylor, goes so far to help us to reach more people and further our impact. Also, we love Taylor’s World Narcolepsy Day “Can’t stop dreaming” cloud photo! ♥
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