World Narcolepsy Day
World Narcolepsy Day There are many ways you can get involved in World Narcolepsy Day, 22nd September 2024. World Narcolepsy Day is the day where the world comes together to raise awareness of narcolepsy so why not join in and help show the world that narcolepsy affects people everywhere! Social media You can take part […]
NEW SURVEY August 2024
Evolve Fieldwork Narcolepsy Study UK applicants only 2nd August 2024 Narcolepsy UK’s Charter describes how we work collectively to achieve our vision of a society that provides the respect, care and support that people with narcolepsy and their carers deserve and should expect. We recognise the importance of research in achieving these goals, and […]
Important News re Medication Shortages
Navigating Medicine Shortages: How Narcolepsy UK is advocating for you Matt O’Neill shares an UPDATE on this vital topic:- We know that recent shortages of medications used to treat narcolepsy and ADHD due to ingredient shortages, manufacturing problems and a general surge in demand have created significant challenges for many of you. These […]
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
WELCOME TO THIS NEW WEBSITE
WELCOME TO THIS NEW WEBSITE We hope you like it and note the changes we have made. WHAT IS NEW?? The ability to log in and make changes to your personal data allowing you to keep your contacts current. LOG IN PAGES This is to allow persons who have ‘Joined Us’ to have access to […]
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.