Rare Renal Registry

To all cystinosis patients…

There are a few registry databases that from time to time you are asked to populate your details into, these are of course important. One that will become more important in the UK is one that Rare Renal UK have and you can find it on their website – https://www.renalradar.org/. This registry will be used to help a future project to hopefully secure National Designation for the treatment of Cystinosis (initially in England). However only your medical professional can submit details to this registry so when you have your next appointment can you ask if they have submitted your details to it. Rare renal say there are only 15 registered against Cystinosis so there are still quite a few to add in there. Please just ask your consultant to put you on there.

Comments are closed.

CFUK and Cystinosis Ireland Jointly Funding Two New Research Projects We are extremely pleased to announce that, for the first time, we have collaborated with [...] Read more...
Latest News and Updates Webinar – 27th November 2021 Please join us on Saturday, 27th November at 2pm for our ‘Latest News and Updates’ [...] 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...
Please Subscribe to Our New Mailing List We are very excited to launch our new mailing list! By signing up for free at the link below [...] 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