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.
Developing News in Cystinuria Research
On October 5th, 2009, the National Institutes of Health (NIH) announced that they would be expanding the Rare Diseases Clinical Research Network, awarding $117 million among 19 new and existing
consortia. The Consortium for Hereditary Causes of Nephrolithiasis and Kidney Failure (informally known as the Rare Kidney Stone Condortium) was among the new groups, and includes a direct focus on cystinuria research in the form of a patient registry and biospecimen repository. The success of this proposal marks a significant opportunity for cystinuria research advancement.
For more information, please read the recent announcement by Dr. David Goldfarb, lead coordinator of the Cystinuria Center. Additionally, please visit the ICF Cystinuria Channel at YouTube to see Dr. David Goldfarb discuss the value and need for a cystinuria registry at the ICF's 2008 symposium in New York.
Both the International Cystinuria Foundation and the Cystinuria Support Network have been integrally involved as Patient Advocacy Groups (PAGs) supporting the Cystinuria Center effort.
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!
