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.

Wendy Walks Again for Cystinosis Last year Wendy Exelby, whose son Adam has cystinosis, raised £400 for us by doing a sponsored [...] Read more...
POSTPONED: National Cystinosis Study Day at QE Hospital, Birmingham UPDATE: Unfortunately this event has been postponed until Spring 2018. When a new date is [...] 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...
Newsletter – November 2012 Issue 21 of the Foundation newsletter has recently been finalised and is available to download [...] 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