The International Cystinuria Foundation

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Advancements in 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 International Cystinuria Foundation and the Cystinuria Support Network are both partners in this effort. The success of this proposal marks a significant opportunity for cystinuria research advancement.

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Cystinuria in "Science"


On October 15th, 2010, researchers published an elegant demonstration of the chemical inhibition of cystine crystal growth. The work, published in one of the world\'s most prominent and respected academic journals, suggests that specifically designed inhibitors might be successful at preventing or limiting the formation of cystine kidney stones in cystinuric patients. Authors include ICF Director Dr. David Goldfarb (NYU) and 2010 ICF Cystinuria Symposium Presenter Dr. Michael Ward (NYU).

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Cystinuria in "Science"


On October 15th, 2010, researchers published an elegant demonstration of the chemical inhibition of cystine crystal growth. The work, published in one of the world\'s most prominent and respected academic journals, suggests that specifically designed inhibitors might be successful at preventing or limiting the formation of cystine kidney stones in cystinuric patients. Authors include ICF Director Dr. David Goldfarb (NYU) and 2010 ICF Cystinuria Symposium Presenter Dr. Michael Ward (NYU).

 

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

The ICF is continuously developing educational resources related to 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!

Articles

Educational Articles

Articles by physicians, researchers, and staff exclusively for ICF community education.
Library

Cystinuria Research Library

Public and private journal article collections for personal education.  Your gateway to cystinuria research.
ICF Publications

ICF Publications

Hard-copy multimedia publications of the ICF including patient brochures and symposium videos.
Forums

Community Forums

Our community forums are host to a large number of like-minded patients, family members, and physicians.

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.

Technical questions? Just Ask!

ICF forum members are encouraged to post their technical questions in the "Ask the Medical Panel" section.  Foundation Director and Cystinuria expert David Goldfarb, MD addresses these topics, and has provided a wealth of technical resources.  Use the search function to seek topics of interest, or start your own discussion!

ICF across the web

ICF Partners

Our Mission

Our mission is to strengthen, educate, and further the general well being of the cystinuric community.  We aim to support a growing and strong group of patients, families, professionals, and friends by providing educational and health related resources to affected individuals worldwide. We also aim to promote knowledge of cystinuria within the research and medical communities in order to reduce kidney destruction, renal impairment, and subsequent health, vocational, and economic impact.

International Cystinuria Foundation, Inc. is a 501(c)3 Public Charity.

Contact Us

Please send correspondence to

  • International Cystinuria Foundation
  • PO Box 271004
  • Fort Collins, Colorado 80527-1004
  • Email: webmaster@cystinuria.org