World Sleep Day Meetups 2026
World Sleep Day is coming up this month on the 14th of March Narcolepsy UK is hosting a bunch of Meetups in celebration. Come alone or with friends/family to meet other people living with narcolepsy and join this supportive community. Message us or RSVP liam.sloan@narcolepsy.org.uk if you would like to attend any of the below […]
#NarcolepsyStories: Mike Guthrie
Mike Guthrie is a past member of the charity’s board of trustees. Mike has had narcolepsy with cataplexy since his teens, and wasn’t diagnosed until he was in his second year of university at about 22. In spite of this, Mike qualified as a lawyer and works in the Real Estate Department at the top-tier […]
Takeda
The Voice of the Patient Summit We were extremely honoured to be asked to take part in this internally focused event in Boston, Massachusetts by the Takeda Global Patient Advocacy team. As one of four patient advocacy organisations attending, the day started with a 5 minute filming session where Matt responded to the following questions. […]
Narcolepsy UK request the “Right to Reply” on an Opinion Sleep column published in The Guardian online Tuesday 9/12/25
I am writing to you concerning the above article “Could a drug for Narcolepsy change the world?” https://www.theguardian.com/commentisfree/2025/dec/09/could-a-drug-for-narcolepsy-change-the-world I would be grateful if you could consider my request for a “Right to Reply” as a matter of some urgency given the article is both inaccurate and discriminatory on a number of counts and requires both an […]
Project Sleep
Over the weekend, we spoke to Julie Flygare at Project Sleep and said that we would like to help her with this petition as we feel as strongly as her about yet another terrible depiction of narcolepsy. It’s not just about the end result though, the NBC perspective that they arrived at a positive depiction without liaising […]
A Fireside Chat in Zurich
Last week we sent our chair, Matt O’Neill, to Zürich to take part in a fireside chat between him and Dr Paul Reading to provide the audience from Takeda with a patient and clinician perspective on Narcolepsy. These opportunities are very important and impactful as they provide us the opportunity to reach an audience by […]
World Narcolepsy Day Meetups 2025
World Narcolepsy Day is coming up this month on the 22nd of September Narcolepsy UK is hosting a bunch of Meetups in celebration. Come alone or with friends/family to meet other people living with narcolepsy and join this supportive community. Message us or RSVP liam.sloan@narcolepsy.org.uk if you would like to attend any of the below […]
Fraser’s Fundraiser
Fraser is fundraising for us and fulfilling one of his ambitions at the same time. Do you have any ambitions that could be turned into fundraiser for us? If you do and want to learn more about how you can do it, you can get lots of info here You can support Fraser at Give […]
Data-Driven Research Needed to Ensure Timely Access to New Narcolepsy Treatments
By Helen Strongman (Trustee of Narcolepsy UK) 12th August 2025 Dr Helen Strongman shares her perspective on access to new narcolepsy treatments – as a person with narcolepsy, trustee and director at Narcolepsy UK, and health data scientist1. As a person with narcolepsy, I fight an everyday tug-of-war with my brain’s desire to yo-yo […]
Takeda Announces Positive Results from Two Phase 3 Studies of Oveporexton (TAK-861) in Narcolepsy Type 1
Takeda have announced, on 14 July 2025, positive progress in the trials of their drug Oveporexton (TAK-861) for narcolepsy type 1. This drug is potentially an oral “orexin receptor 2 selective agonist”. Narcolepsy type 1 (ie narcolepsy with cataplexy) is caused by the loss of orexin-producing neurons in the brain. Orexin agonists are designed to […]