Blog

Keep up to date with all the latest news from the world of narcolepsy, and some of the things we are doing to help.

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Green light for new narcolepsy medication across the UK

12 July 2022

Following our update in November 2021, we are now delighted to announce that all four countries of the United Kingdom have agreed to make solriamfetol available for the treatment of excessive daytime sleepiness in adults with narcolepsy for whom modafinil is not effective.

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Do anti-histamines affect Pitolisant/Wakix?

30 June 2022

We have noticed quite a few posts querying the use of anti-histamines when talking Pitolisant/Wakix.

We have referred this to the manufacturer who have referred to the wording contained in the Summary of Product Characteristics (See e.g. here: https://www.medicines.org.uk/emc/glossary ) which you will find online or in each box of medicine within the Patient Information Leaflet.

Re. Anti-histamines, the exact wording from SPC:

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MacDonald wins golf open

26 June 2022

Congratulations to golfer Sam MacDonald, a person with narcolepsy and cataplexy, who has won this year’s Men’s Net Competition in the The English Open Amateur Stroke Play Championship for golfers with a disability. With more than 40 contestants registered for the competition, held at Garden Park in Cheshire on 21-22 June, Sam came first over the two rounds with a three-below-par overall score of 143. This is the second successive year that Sam has won the Men’s Net Competition.

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Queen's Jubilee bank holiday - closed

30 May 2022

Narcolepsy UK is a small team, and unfortunately we are not able to maintain services over the Queen’s Platinum Jubilee period, from the close of business on Wednesday 1 June until the morning of Monday 6 June 2022.

If, however, there is a matter that is vitally urgent, please call Nicola Rule on 07920 650 552.

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Trustee - update

29 May 2022

On behalf of everyone at Narcolepsy UK, we’d like to welcome Mike Johnston on to the charity’s board of trusteMike has had narcolepsy with cataplexy since his teens, and wasn’t diagnosed until he was in his second year of university. In spite of this, Mike qualified as a lawyer and works in the Real Estate Department at the top-tier Scottish law firm Burness Paull LLP.

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Forthcoming meet-ups

14 May 2022

If you have or haven’t met anyone with narcolepsy before, then this is a good starting point.

In the attached document, you will find a list of forthcoming events, all of which are ‘hosted’ by volunteers and are purely social groups getting together to chat and learn from one another.

We hope we might able to hold a Conference later this year if we are able to source adequate funding.

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London Meet Up in May

20 April 2022

London Coffee Meet Up at Hej Coffee (Bermondsey) for people with Narcolepsy and their carers/friends/family on Saturday 28th May - drop in any time between 10:30 - 2:30pm.

Host for the event and representing Narcolepsy UK is Antonia.

The venue may change depending on the number of guests - check event details on Facebook - https://fb.me/e/2xF4u8x5m

 

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Day 4 of Good News Week!

1 April 2022

Not an April Fool but Day 4 of Good News Week........ £63,726 awarded over 6 years for PIP.

Don't despair if NO is said first time round - our Benefits Advisor will support you in FIGHTING for your rights. We live and breathe Narcolepsy so Let Us Help You ..... and You.

We are here to help x 

info@narcolepsy.org.uk

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Day 3 of Good News Week!

31 March 2022

Today we share a PIP Award of £53252 over 7 years.

A chronic neurological condition with no cure - this creates a Disability and you are entitled to PIP. It is not always an easy road but WE will support you through the process.

Pop an email to info@narcolepsy.org.uk to start the process. We are here to help.

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