Resources

Our aim is to make this the “go to” place for narcolepsy information. Use the filters to find everything you need.

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Pregnancy and narcolepsy

If you have narcolepsy and are pregnant, you will need to ensure that the healthcare professionals you come into contact with are as well informed as possible about your condition and your medication.

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Event Feedback Form

In order for us to continue to organise conferences and events to benefit people with narcolepsy, it is vital that we are able to show to potential donors that our events are of value to our community.

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Benefit application checklist

The following items can be useful to supply with any benefit applications relating to narcolepsy. It will be helpful to you if you can gather as many of them as possible to include with your application.

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Posters

This resource page has a number of poster designs that can be downloaded and printed for display.

Please note the posters are free to distribute but remain the intellectual property of Narcolepsy UK and cannot be amended or altered without permission.

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Clinical trial - single dose sodium oxybate

Flamel (Part of the Avadel Pharmaceuticals), are looking for subjects to participate in their clinical trial evaluating their once nightly sodium oxybate for the treatment of EDS and cataplexy in narcolepsy.

FT218 is dosed once at bedtime unlike the currently marketed formulation of sodium oxybate (Xyrem®) which needs to be taken twice nightly, once at bedtime and then again 2.5 – 4 hours later.

Patients with a diagnosis of narcolepsy who meet the study criteria may be eligible to participate in our clinical trial.

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Sodium oxybate (Xyrem) – Ex gratia provision to victims of Pandemrix

Scheme for ex gratia funding of Xyrem to people who have made personal injury claims after developing narcolepy caused by Pandemrix vaccine

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