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

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 […]

#NarcolepsyStories : Erin

At 16, I was the typical school student. I loved sports, enjoyed English and hated maths. I was constantly busy, juggling multiple extracurricular commitments throughout the week in addition to my heavy GCSE load. It was at this point in school that things started to feel hard. Not your typical, ‘overworked’ student but more ‘I […]

Participate in a study – Situational Sleepiness Scale

We at Narcolepsy UK are excited to share with you research that aims to improve how we help children with narcolepsy in the future and, more importantly, how you can get involved. Southampton children’s sleep clinic are running a study to determine how to make sleep questionnaires better which, in turn, will have a positive […]

Study on the quality of life and costs of narcolepsy and idiopathic hypersomnia

Narcolepsy UK has agreed to assist in the completion of an international research project on the burden of narcolepsy and idiopathic hypersomnia sponsored by the pharmaceutical company Takeda (USA). The goal of this research is to better understand the impact of narcolepsy and idiopathic hypersomnia on quality of life, health care, and personal costs. Click […]

BBQ livestream this weekend

Don’t forget to tune in this weekend to the 36 hour live BBQ with Rob. Get involved with Rob BBQs… ask about his cooking skills… talk about narcolepsy how it affects you and any tips to share… be involved! Starts Saturday, 2nd September 2023 at 8am, for 36 hours! Finishing at 8pm, 3rd September. […]