SUPPORTING INDIVIDUALS, FAMILIES AND RESEARCHERS
IN THE CYSTINOSIS COMMUNITY

National Designation Survey – Your Chance to Have a Say

We need your feedback! A new model of care for cystinosis has been proposed as part of the national designation application to NHS England. Your feedback is vital, the model of care needs to suit the needs of cystinosis patients. We have created an online survey you can fill in to give your opinion – https://www.quicksurveys.com/s/r6C5Fi

Please note, the survey is open to anyone living in the UK – the initial application is to NHS England but it is hoped that Scotland, Wales and Northern Ireland could adopt similar models. For those of you living outside the UK, we are very grateful for your interest but we do need to only accept responses from the UK for the time being.

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