Queen of Sleep

Living with narcolepsy: a personal journey

Help Change Lives – Fill in Rare Disease UK’s Survey

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If you live in the UK and have narcolepsy, are a carer/relative please take 20 min to fill in this survey from Rare Disease UK. I have copied and pasted some information regarding the survey, please see below. At the end of the paragraph you will find the link that will take you to the survey. Please take time to fill out the survey – help to change lives of narcolepsy sufferers in the UK.

Rare Disease UK’s Survey of Patients’ and Families’ Experiences of Rare Disease

Please help us to build a picture of rare diseases in the UK from the perspective of patients, families and carers
Rare Disease UK is conducting a survey of patients’ and families’ experiences of access to care, treatment and support in the UK. This survey will be crucial in facilitating our campaigning and awareness raising work. The results of the survey will:

Help gain an understanding of some of the issues that matter to patients and families
Be put to politicians and policy makers to highlight areas of concern/good practice
Be published in a new RDUK booklet of patients’ and families’ experiences – this will be launched at a reception at the House of Commons in the autumn
Help inform our working groups and our report into a strategy for rare diseases (which will be launched on Rare Disease Day 2011)
Assist in raising awareness of rare diseases through the media

By participating in the survey you really will be helping to inform our work. If you are a patient organisation, please encourage your members to respond; if you work with people affected by a rare disease, please let them know about the survey. The more people that participate the more weight the results will carry!

The survey should take no longer than 20 minutes to complete. There are boxes at the end of every page if you would like to elaborate on your answers – all the additional information we receive will be extremely helpful, especially to inform the report on a strategy for rare diseases.
The survey is spilt into sections looking into:

Research, Diagnosis, Commissioning and planning (treatment and specialist centres), Information and support, Accessing coordinated care

The deadline for responses is the 31st of July

To participate in the survey please visit the following website:

Written by Queen of Sleep

June 21, 2010 at 12:16 pm

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  1. […] This post was mentioned on Twitter by Planet Narcolepsy, Queen of Sleep. Queen of Sleep said: Help Change Lives – Fill in Rare Disease UK's Survey: http://wp.me/pPjSP-3L […]

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