Blog: Charity updates

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Fundraisers needed!

8 May 2018

Narcolepsy UK has always relied on volunteers to raise funds to help support the charity. As the charity grows, we require volunteers to participate in fundraising roles to help us generate much-needed income to keep the charity running.

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Helpline not available 4-8 May

3 May 2018

Please be aware that the helpline will not be available between the dates of 4th and 8th May 2018.

We have also had responses to our advert from 28th March, and are no longer seeking a Benefits & Helpline Advisor.

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New Faces on the Board of Narcolepsy UK

24 April 2018

We are pleased to announcement the appointment of two new Trustees to the Board of Narcolepsy UK.

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Old & New Friends in Oslo

23 April 2018

I left home for Oslo yesterday morning, having had an invite to attend and speak at Frambu (www.frambu.no), from old friends at NevSom - Norwegian Centre for Expertise for Neurodevelopment Disorders and Hypersomnias, Oslo University Hospital, a part of the Norwegian Advisory Unit on Rare Disorders.

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Donation Envelopes - An easy way to add Gift Aid

17 April 2018

We are now able to provide discreet donation envelopes which enable the easy collection of the information necessary to enhance the value of the donation through Gift Aid.

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Job opportunity - Benefits & Helpline Advisor

26 March 2018

Are you interested in working with Narcolepsy UK?

Benefits & Helpline Advisor required

Supplementing the work of Rebecca, who has recently reduced her hours following a change to her career path. We wish Rebecca well and are pleased she will still be working with us.

We seek a conscientious and dedicated person to work with our clients for 12 hours a week. Some day and some evening hours preferred, although we can be flexible with this we do need to have set hours when clients are able to contact you.

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Meeting of European Patient Advisory Group

25 March 2018

A very good couple of days spent this weekend talking about how the European Patient Advisory Group can assist in raising awareness of clinical trials for the Rest-On trial.

https://www.narcolepsy.org.uk/resources/clinical-trial-single-dose-sodium-oxybate

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Narcolepsy Charter - survey being developed

9 March 2018

This weekend, as part of the preparation work for the Narcolepsy Charter project introduced at the last Narcolepsy UK conference, we will be distributing a short-form pilot version of a survey at the arranged meet-ups to help us understand all the needs and factors affecting the lives of people with narcolepsy in the UK. Once we have processed the feedback we will then progress to an expanded online survey and hope to have as many people as possible engage with it.

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London meeting date update

8 March 2018

This weekend there is a London meet up arranged as part of the awareness-raising "Dream Talking Weekend". It was incorrectly listed as Saturday 10th March.

Please note the correct date and time for this is: Sunday 11th March 2018 from 3pm - 5pm. The venue is Prezzo, 35a Kensington High Street, London W8 5BA.

Our apologies for the error in the original listing.

Click here for meeting details

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