THE CHARITY DEDICATED TO HELPING PEOPLE WITH NARCOLEPSY
Supporting people with Narcolepsy, cataplexy and idiopathic hypersomnia, their families, carers and others interested in improving their quality of life
NARCOLEPSY UK
Narcolepsy UK exists to support people with narcolepsy, cataplexy and idiopathic hypersomnia, their friends and families.
We do this through providing information and support. In 2024, we helped almost 400 people, obtained over £1.2m in benefits and housing support, as well as presenting to 80 schools with information, advice, and assisting in procuring EHCP awards.
We actively campaign for greater understanding of narcolepsy, and how to cope with, and assist those with the condition, as well as providing information on drugs availability.
We do not receive any support from government, but we are able to do this work as a consequence of the fund raising carried out by our supporters, and with the voice of our supporters.
We would ask all of you to register as a friend of Narcolepsy UK. Whilst we encourage donations – we rely on them for our work – there is no cost to become a Friend.
In 2024, volunteers have contributed well over 1,000 hours of their time for free, to help the charity, its aims, and to support people with narcolepsy and their families. If you would like to join them, you will be very welcome – Volunteering – Narcolepsy UK
Fund Raising
Last year (2024) we spent £62,000 on our activities, the vast majority of which was spent on the three part-time staff that support the charity's activities, including the helpline (and the follow up responses) and the support required to access the £1.2m of benefits we helped people access. Almost all of this money has to be raised from people, either through fund raisings or donations and bequests, with very little support from the public sector.
Support for parents, carers and schools
We provide support, both in information and active interventions, with schools, better to inform teachers of the condition and how best to assist children with Narcolepsy attain the best educational results.
Voice of Narcolepsy
By becoming a Friend of Narcolepsy UK, you lend your voice to our work in discussions with drug companies, medical organisations and others, such as the DVLA and airport assistance groups.
Updates and stories
Narcolepsy is not a common condition and is rarely in the news. As a Friend of Narcolepsy UK, you both have access to news, meetings and updates, including stories of others with the condition, and the opportunity to present your own story to help others.
NEWS AND EVENTS
Keep up to date with all the latest news and events from the world of Narcolepsy, and some of the things we are doing to help.
NEWS
Takeda have announced, on 14 July 2025, positive progress in the trials of their drug...
Ellyn Berman-Jones, a doctoral student in educational psychology at Cardiff University, is researching how adolescents...
