SUPPORTING INDIVIDUALS, FAMILIES AND RESEARCHERS
IN THE CYSTINOSIS COMMUNITY

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!

 

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