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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Running the Marathon for Narcolepsy UK

31 May 2018
marathon, ballot, Virgin Money, London

2019 Virgin Money London Marathon

As we have had some interest from potential runners in next year’s London Marathon, we thought we would explain the position of the charity when it comes to obtaining places.

There are three different bond schemes operated by London Marathon Events Ltd. These are:

The Golden Bond Scheme

A Virgin Money London Marathon Golden Bond gives the charity that holds it five guaranteed places in the event each year. This scheme has been fully subscribed for many years and the waiting list is closed for the foreseeable future.

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Rebecca moving on

26 May 2018
helpline, staff, Rebecca

After 4+ years with us as Benefits and Support Adviser, Rebecca has taken the decision to move on to pastures new.

During her time with the charity Rebecca has helped many people with benefits claims/advice and general support, and she will be sorely missed. Trustees and staff of Narcolepsy UK have said a well deserved Thank You on behalf of the charity and all those people she helped along the way. We wish her well in all things.

Please note the Helpline remains open, operated by staff and dedicated volunteers.

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Fundraisers needed!

8 May 2018
Fundraising, fundraiser, volunteer

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
helpline, advisor

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

Matt O'Neill
23 April 2018
Oslo, Frambu, NevSom, Norway, Norwegian

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
benefits, helpline, advisor, Job

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
EPAG, European Patient Advisory Group, Rest-On, clinical trial, trial, Avadel

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
charter, survey, questionnaire

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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