INFORMATION FOR PATIENTS

Cystinuria is a rare genetic condition which results in the build-up of the amino acid cystine being formed in your kidneys and bladder.

What is Cystinuria and how does it affect people?

• For an overview of Cystinuria, the cause of this disease, how it affects people and further information about the genetics of this disease – please click the following link;
  • Genetics Home Reference – Cystinuria

How do other people feel and what is their experience?

• Siblings with Cystinuria
  • https://globalgenes.org/raredaily/imagine-living-life-with-constant-and-excruciating-kidney-stones-meet-three-siblings-fighting-cystinuria/

Patient Support Groups

• CystinuriaUK
  • https://sites.google.com/site/cystinuriauk/home

More detailed Information for Patients will be available on the ARRK website in the near future.

If you would like to be part of a Disease Specific Research Group (DSRG) for Cystinuria, please contact the ARRK registry (arrkregistry1@gmail.com).

The resources on this site should not be used as a replacement for care or advice from your medical doctor. If you have questions about a medical condition or health related issue, please consult your medical doctor or a healthcare professional.

This page was last updated on 15th Oct, 2018.