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 […]
Anna Smith is raising money for Narcolepsy UK in the London Marathon
I didn’t know much about narcolepsy until an awful day in 2018, when a paediatrician suggested this might be what Noah was living with. In some ways, it was a relief to finally have an explanation as to why our once high-energy, bubbly 8-year-old had started falling asleep at school, during meals, and even standing […]
Lyndsay Stallard is fundraising for NARCOLEPSY UK
please follow Lyndsay’s story below https://www.justgiving.com/page/lyndsay-stallard-3
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. […]