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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London to Brighton - Another great effort!

5 June 2017

Our thanks to Louise, another one of our gallant band of fundraisers, who has walked from London to Brighton in support of Narcolepsy UK.

That's 21 hours of walking over 2 days! Louise tells us it was one of the hardest physical endurance events she has ever done, but worth every penny in view of the sponsorship of around £750 she has raised.

Well done, Louise, and thank you from all at Narcolepsy UK!

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Volunteers Week 2017

1 June 2017
Volunteers Week, volunteers

1-7 June 2017 is National Volunteers Week. Narcolepsy UK would like thank all of our volunteers for contributing their free time to help support the charity. Our volunteer community continues to grow stronger each year.

Some of the things we have our volunteers to thank for are network meeting support groups, raising public awareness and fundraising for the charity.

THANK YOU FOR ALL YOUR HARD EFFORTS!

Liam Sloan, Volunteer Coordinator

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Hitchhiking with narcolepsy

2 May 2017

Juan Nuevo is to hitchhike from Bristol to John O’Groats, down to Lands End and back to South Gloucestershire in just ten days

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Marathon Fundraising Update

1 May 2017

Marathon fundraising effort for Narcolepsy UK on 23 April 2017

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Success in Devon!

27 April 2017
sodium oxybate, xyrem

Last Tuesday, 18th April 2017 Matt O’Neill and Peter Todd completed an overnight “dash” to Devon where they joined a patient on Wednesday morning to present at a “Treatment Decision Review (TDR) Panel” in an attempt to reverse a decision by an “Individual Funding Request” (IFR) Panel to refuse funding for treatment with sodium oxybate for an adult with severe narcolepsy.

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What happens when you don’t provide us with the medicine we need

Matt O'Neill
20 April 2017
sodium oxybate, xyrem, cataplexy

Following a decision on Tuesday NOT to approve the use of sodium oxybate for an adult with severe narcolepsy & cataplexy due to both benefit & cost issues, we drove to Devon to attend a Treatment Decision Review Panel at Exeter Town Hall.

I would like you all of you with narcolepsy out there, including your friends and family to share this picture because it shows the impact of the decision taken for the individual.

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Misconception or Inequality and Discrimination?

17 April 2017
sodium oxybate, xyrem, NHS England, IFR, Individual Funding Request

Ongoing work to remove the barriers to access to sodium oxybate for management of narcolepsy and cataplexy.

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European Narcolepsy Day, Palma, Mallorca 2017 - Highlights

Matt O'Neill
24 March 2017
European Narcolepsy Network, European Narcolepsy Day, Flamel, European Patient Advisory Group, Bioprojet, Wakix, Pitolisant, Neurological Alliance, Disability Rights UK, PIP, survey

Mid-March is always our busiest time of year, with more meet-ups arranged around the country each year and the gathering of the clans at the European Narcolepsy Network “European Narcolepsy Day” meeting held in a different host nation each year and now in it’s 8th year.

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Disability Rights UK survey on PIP problems

24 March 2017
Disability Rights UK, PIP, government, survey

Narcolepsy UK would like you to help us by completing this survey from Disability Rights UK. Disability Rights UK have been asked by the MPs on the House of Commons Work and Pensions Work and Pensions Select Committee to help in its investigation of problems with Personal Independence Payment (PIP).

The MPs are keen to receive evidence of problems disabled people have experienced with the PIP claim, assessment and appeals process.

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