World Sleep 2019 – A Summary of Events

2nd October 2019

Narcolepsy UK at World Sleep 2019


On Saturday, 21st  September, we were pleased to be able to attend an Education Day organised by Wake Up Narcolepsy (WUN) in collaboration with Hypersomnia Foundation at SLEEP EXPO 2019. This one day conference brought together PWNs, people with IH, families, caregivers, doctors and researchers to hear from experts in the field. Highlights were panel discussions where both doctors and patients asked specific questions which were answered by Dr. Thomas Scammell, Dr. Brian Murray, Prof. Yves Dauvilliers, and Dr. Indra Narang.

The event closed with an inspiring personal testimony from Kelsey Biddle, a WUN board member, who delivered ted-talk style account of her journey with narcolepsy. You can watch her talk here.

On the morning of Sunday, September 22nd, Narcolepsy UK celebrated the inaugural World Narcolepsy Day whilst attending the World Narcolepsy Day Facebook Live event, co-ordinated by Julie Flygare. You can watch it here.

In the evening, we took part in a panel awareness session to highlight the work being undertaken by leading Narcolepsy organisations across the world. In our case, focussing on the Narcolepsy Charter, which has been received very well by both patients and clinicians.Narcolepsy UK had a booth at World Sleep 2019.

Thanks to our friends at Narcolepsy Network, you can watch it here

Here we focused on showcasing the excellent work we have undertaken to produce the Narcolepsy Charter and spent time running through the reasons for its creation and the powerful messages it can deliver about patient experience across all of the areas where narcolepsy touches our lives, not those that are limited to a clinical perspective. Our Chair, Matt O’Neill manned our booth personally and created many new relationships with clinicians and others connected with sleep research and delivery of current and future medications so important for our ability to function as best we can in a very demanding world.


23.25 Hours of Narcolepsy & Hypersomnia

The Narcolepsy & Hypersomnia Track at World Sleep 2019 included some of the biggest names in the field offering cutting-edge science and information about research & treatment options and we had several opportunities to catch-up with our colleagues across the patient advocacy and clinical worlds in addition to companies in the process of developing new and novel medications specifically for the narceolpsey community.

Pipeline medication updates

It was a fascinating meeting for current news relating to several new medications in pipeline by various pharmaceutical companies. Even more pleasing that Narcolepsy UK has been involved with many of these companies and our opinions and advice are actively sought and acted upon.

Without any hesitation, we think this is the most exciting period for the development of new medications for our community that we have ever seen and our absolute commitment is to work closely with anyone who wishes to be active in this space on behalf of patients everywhere

Avadel Pharmaceutical – Once-Nightly formulation of sodium oxybate (FT218)

Axsome Therapeutics Inc – Drug AXS-12

for the treatment of cataplexy and sleep attacks (see abstract 0058). AXS-12 (reboxetine) is a highly selective and potent inhibitor of norepinephrine reuptake. In an open-label pilot trial involving patients with narcolepsy, the medication significantly improved excessive daytime sleepiness (EDS) and cataplexy attacks. Double-blinded, placebo-controlled trials are underway.

Inexia Ltd

Inexia is developing intranasal orexin positive modulators for the treatment of narcolepsy. You may remember that we previously identified Optinose as a potential intranasal Exhalation Delivery System (EDS) from our contact with other Narcolepsy patient organisations.

Jazz Pharmaceutical

Sodium oxybate alternative to Xyrem

About Sunosi™ (solriamfetol) Sunosi is a dual-acting dopamine and norepinephrine reuptake inhibitor (DNRI)

Suven Life Sciences Ltd – Drug SUVN-G3031

This molecule is described as a potent and selective H3 receptor inverse agonist. The chemical is orally bio-available and has successfully passed Phase 1 trials. Phase 2 trials for the treatment of narcolepsy with and without cataplexy are being planned for the US.

Takeda Pharmaceutical

Data presented at World Sleep Congress demonstration early signs of efficacy for TAK-925, a Selective Orexin Type-2 Receptor (OX2R) Agonist, in patients with narcolepsy Type 1.