SUPPORTING INDIVIDUALS, FAMILIES AND RESEARCHERS
IN THE CYSTINOSIS COMMUNITY

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.

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