The International Cystinuria Foundation

Our goal as an organization is to to strengthen, educate, and further the general well being of the cystinuric community. We focus on making the best cystinuria-related educational resources easily at hand, and fostering the development of a community interested in learning about cystinuria and managing the disease.

Cystinuric Patients: Your input is needed!

Dr. David Goldfarb of St. Vincent's Hospital and NYU is conducting an online quality of life survey for cystinuric patients. Please help support cystinuria research and benefit future patient quality of life by participating in this valuable and private survey.
[click for more information]

News & Updates
(archive)

April 02, 2008

Online registration is now available for the 2008 ICF Cystinuria Symposium, to be held on Saturday, July 26th, at Saint Vincent's Hospital in New York, NY. Please help the ICF make the appropriate food and space arrangements by registering early!

April 01, 2008

Dr. Stephen Erickson's "Cystone" study at the Mayo Clinic has reached full enrollment! Thank you to all members in the community who are supporting this important clinical research.

What is Cystinuria?

Cystinuria is an inherited defect that prevents the body's retention of certain amino acids from excretory pathways. The clinical effect of cystinuria occurs in the urinary tract where these amino acids collect in concentrations that are much higher than normal. As a result, one of these amino acids named "cystine" has a high potential for forming solid crystals which group together to form rock hard cystine kidney stones.

Looking for Cystinuria information but don't know where to start?

The ICF is continuously developing educational resources related to cystinuria. Our resources include a number of educational articles that provide interested readers with an opportunity to learn about the basic underlying concepts of cystinuria-related physiology. More detailed information can be found in the ICF Research Library; your gateway to the world of cystinuria research. If you have been recently diagnosed, the ICF has published a brochure (available through ICF Publications) to help you understand the basics of approaching and managing cystinuria. Whether you are a newcomer or a veteran brushing up on your facts, give these resources a look and then head over to the community forums to discuss your findings with other cystinurics worldwide!