A new hope for people with Type 1 Narcolepsy?
We commissioned qualitative research to inform Narcolepsy UK’s response to the National Institute of Health and Care Excellence (NICE) consultation for oveporexton. NICE will decide whether this new drug represents value for money for use by the NHS in England and Wales. Oveporexton will also be assessed by the Medicines and Healthcare products Regulatory Agency […]
A new document for use in education
Narcolepsy Passport We’re delighted to make the Narcolepsy Passport 2026 available for download. Developed by a young person with narcolepsy for other young people, this passport has been created to support conversations about individual needs in school, college, care, volunteering and workplace environments. It helps people with narcolepsy explain how the condition affects them and […]
Major Oveporexton Milestones Reached
The last few weeks have marked significant progress for the narcolepsy communityworldwide. China approval China approved oveporexton (ORZEYFUL) on 22 July 2026 for people aged 16+ withType 1 Narcolepsy, becoming the first country to approve the first-in-class orexinreceptor agonist treatment. United States approval The United States FDA approved oveporexton on 5 August 2026 for adults […]
Invitation to take part in an important market research study for Narcolepsy UKÂ
Are you living with narcolepsy type-1? We’re looking for people to take part in a confidential 30-minute market research interview to share their experiences, discuss their treatment needs, and help shape the future of care. Narcolepsy UK have initiated and funded this research to help us respond to questions from NICE about the need for a new narcolepsy treatment. NICE develops health and medicines guidance for England and Wales. If you’ve been diagnosed with narcolepsy type-1 and have had […]
Provigil®
We are writing to inform you of the global divestiture of Provigil® from Teva Pharmaceuticals to Neuraxpharm. Teva’s decision to divest Provigil® was not widely communicated to sleep clinics, hospitals or pharmacies & certainly not shared with Narcolepsy UK, despite us having regular contact over several years on periodic supply issues. Important Information About Provigil® […]
Personal Independence Payment and Narcolepsy: What the Data Tells Us About Access and Support
Personal Independence Payment (PIP) helps cover the extra daily living and mobility costs of having a disability. But how well does the system work for people with narcolepsy? Researchers at the London School of Hygiene & Tropical Medicine, working with Narcolepsy UK, analysed Department for Work and Pensions statistics alongside anonymised data from Narcolepsy UK’s […]
Patients in limbo
Today we have taken an unusual step and contacted directly the joint chief executive of NHS North Bristol Trust about the concerns that many of you have raised with us recently. If you are one of the individuals who has been or is impacted by the reduction of service at the above sleep centre then […]
Word on Health Podcast about Narcolepsy
Helen Strongman joined the Word on Health podcast to talk about narcolepsy from both a professional and personal perspective, as a director and trustee of Narcolepsy UK, academic researcher, and someone living with the condition. Her contribution starts at 4 minutes 50 seconds. In this episode, Helen explains what narcolepsy is, how it affects people day to […]
Disability Pride: empowerment and the narcolepsy community
When you hear the term “disability,” you might think of negative perceptions shaped by the “medical model,” which views conditions as things to be fixed and hidden. However, the Disability Pride movement challenges this notion, emphasising that societal barriers, rather than medical conditions, disable individuals. This shift highlights that disabled individuals, including those with narcolepsy, […]
Update: NICE Draft Scope Consultation
Oveporexton for Type 1 Narcolepsy Narcolepsy UK would like to update our community on a recent draft scope consultation from NICE about the possible evaluation of oveporexton for the treatment of type 1 narcolepsy. Following careful review, we have submitted a formal response to NICE as part of the consultation process. Our response reflects the […]