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Narcolepsy UK - Nicola Rule - 07920 650 552 nicola.rule@narcolepsy.org.uk

Nicola Rule has been involved with Narcolepsy UK for many years having first made contact with the charity in its former guise of UKAN when her own daughter was diagnosed with narcolepsy in the 1990s.    Since then Nicola has been a Trustee of the charity and latterly an employee as Operations Manager attending to a diverse range of issues.  

Nicola reports that the charity is the only one in the UK dedicated to supporting PWN and the fact so many of the Board and staff either have narcolepsy themselves or have a close family member with the illness gives it an insight and depth of feeling which is not always available to clients elsewhere.  It is especially helpful to have that personal insight when contacted by newly diagnosed folk who may have lived with the illness for many many years prior to obtaining a diagnosis; which is then both a shock and a relief.

When organising Conferences the charity is keen to locate speakers who have a good background knowledge of the illness and who can speak to registered members with a depth of understanding which may be lacking in everyday life.   Nicola also tries to arrange a good variety of indepth medical topics with briefer lighter talks,  often from fellow pwn, to give, hopefully, something for everyone whilst understanding that the best 'medicine' may just be talking to others with the same daily trials.

 

 

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