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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Narcolepsy Charter – Consultation goes live!

28 June 2018
charter, survey, questionnaire

One of our most important projects for 2018 is the development of the Narcolepsy Charter.

Aimed at tackling the challenges and discrimination faced by the narcolepsy community across the UK, the Charter will be a written statement of the rights of people with narcolepsy and their carers. It will set out the basic rights that people with narcolepsy and their carers deserve and should expect.

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We want to see your art!

Tim Kavanagh
20 June 2018
conference, art, exhibition, display, creative, creativity

We are pleased to announce that Narcolepsy UK are planning the return of hosting an exhibition of art and other creative endeavors at our annual UK conference. The conference is in September (see link at bottom of this post for more details), and we would love to display work from people with narcolepsy. For those in the UK (or planning to visit), we would also very much like to meet you so would encourage you come along!

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Data Protection - Our commitment to GDPR

16 June 2018

All organisations that process personal data now have to comply with the requirements of the GDPR, and at Narcolepsy UK we are committed to doing so.

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Volunteers' Week – Thank you everyone!

7 June 2018

To wrap up our serise of posts marking the contribution made by volunteers to Narcolepsy UK, our Chair Matt O'Neill describes the many ways that volunteers play a part in the charity's work.

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Volunteers' Week – Thank you to our advocates!

6 June 2018

In the penultimate post in our series marking the contribution made by volunteers to Narcolepsy UK, Trustee Henry Nicholls describes the contribution made by volunteer advocates.

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Volunteers' Week – Thank you to our meeting coordinators!

5 June 2018
Networking, Volunteers Week, volunteer, meeting, meet up, Liam

In the latest in our series of posts marking the contribution made by volunteers to Narcolepsy UK, our Volunteer Coordinator Liam Sloan describes the contribution made by volunteer Network Meeting Coordinators across the UK.

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Volunteers' Week – Thank you to our benefits advisors!

4 June 2018
Volunteers Week, volunteer, benefits adviser, helpline, Nicola, Operations Manager

Volunteers’ Week is a chance to say thank you for the fantastic contribution millions of volunteers make across the UK. It takes place 1-7 June every year and is an opportunity to celebrate volunteering in all its diversity.

In the second of our series of posts marking the contribution made by volunteers to Narcolepsy UK, our Operations Manager Nicola Rule Allen pays tribute to our volunteer benefits advisers:

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Volunteers' Week - Thank you to our fundraisers!

1 June 2018
Volunteers Week, volunteer, Fundraising, fundraiser, grants, Chris, ideas

Volunteers’ Week is a chance to say thank you for the fantastic contribution millions of volunteers make across the UK. It takes place 1-7 June every year and is an opportunity to celebrate volunteering in all its diversity.

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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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