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 […]
Update on progress on Narcolepsy drugs
Interesting market-facing updates on progress with Orexin receptor 2 (OXR2) agonists Two parties involved in research & clinical trials into targeted treatments for narcolepsy and idiopathic hypersomnia made announcements on progress and timelines last week. Its still far too early to be able to indicate when, if the work is successful, we will see […]
Wellness Room
Diet Survey
Liz Boon, a Dietetics Master’s student at the University of Central Lancashire, is conducting a survey about narcolepsy type 1, EDS and diet
IAPO launches survey to identify unmet patient needs
The International Alliance of Patient Organisations are conducting a survey.
Helpline support is a “lifeline”
A lovely donation has been made by our supporter Julie French who has said “Narcolepsy UK were a lifeline when my son was diagnosed 9 years ago”. Our Helpline supports many people in many ways – why not give us a call on 0345 4500 394 (We do not have a person ‘live’ 24/7 but […]
You are not alone in this
One of the challenges of narcolepsy and idiopathic hypersomnia (IH) is the feeling that – even with the best will in the world – nobody really understands what you are going through. At one level, there is some truth to this. Hypersomnias like narcolepsy and IH are spectrum disorders, so everyone’s experience of these sleep […]
Backpacking with narcolepsy
Last year (2022), aged 27, after cajoling my body into working a 9-5 job for several years, and having relied on a concoction of medications to get me through each day, I decided to request a career break to go travelling around Southeast Asia for three months.
Volunteer bill posters
Would you be prepared to stick up posters to raise awareness of narcolepsy? You can download a selection of posters here and print them in colour or black/white or we can mail them to you. You can do it as and when you can. Take one on your next visit to the doctor’s surgery, hospital, pharmacy, shopping […]