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.

Comments are closed.

Cystagon / Procysbi Survey Do you have experience of cystagon (mercaptamine), procysbi (cysteamine bitartrate), or both? [...] Read more...
CNE International Conference 2024 Cystinosis Network Europe and Cystinosis Foundation UK are delighted to announce the 2024 [...] Read more...
Cystinosis Comic Book Series by Artist Kevin McCalla The Cystinosis Research Network in the US has teamed up with Kevin McCalla, a young artist who [...] Read more...
Summer 2024 Newsletter The Summer 2024 edition of our email newsletter is available to view at the link below. CFUK [...] Read more...
All website content copyright Cystinosis Foundation UK (Charity No.1074885) 1997-2013, except where explicitly stated.
Data Protection Act Registration Number: Z9880997. Please refer to our terms and conditions and our privacy policy.
site:bonnyday