Have you registered with the Cure Cystinosis International Registry (CCIR)?

If you or your child suffers from Cystinosis then the CCIR are calling for you to register. The CCIR is the ONLY International Cystinosis Registry in the world, and they need as many Cystinotics to register now!

Please register here:  https://cystinosis.patientcrossroads.org/

It can make a real difference to the Cystinosis community and is a very good way of staying informed…

  • The CCIR is a hub of information for the global Cystinosis research community.
  • There is a lot we don’t know about Cystinosis.  The information provided by patients/families will help spot trends and track symptoms and complications.
  • It is important you register now as the more information there is in the database, the sooner it can be put to use by researchers who use this valuable resource to develop new research studies/clinical trials.
  • CCIR newsletters and postings will inform and educate the Cystinosis community.
  • Interested doctors and researchers must be approved by the CCIR curator in order to access this information.  All identifying information is kept confidential – names and personal information are never revealed.
  • The registration process takes approximately 20 minutes. All questions are medically and scientifically based – the questions were developed by the leading Cystinosis experts in the world.
  • If possible please have a copy of your most recent labs to hand when registering.
  • The CCIR has a professional curator, Betty Cabrera, who is there to help with the registration process. Contact Betty at curator@cystinosisregistry.org.

Dont delay and register today!


Comments are closed.

Jonathan Terry Awarded MBE We are incredibly pleased to report that our founder, Jonathan Terry, has been awarded an MBE [...] Read more...
National Cystinosis Study Day at The Priory Rooms, Birmingham NEW VENUE: The event will now be held at The Priory Rooms in Birmingham City Centre. The QE [...] 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.