The 4th Symposium of the International Cystinuria Foundation will be held on Saturday, July 10, 2010, at the NYU Langone Medical Center in New York City.

Patients, families,physicians, and researchers are invited to attend. The biennial event is a forum for both disease education and community building. Join us to learn the latest advancements in cystinuria research, and discuss with others who are affected by the disease.

Topics of discussion this year include advancements in clinical informatics, cystine crystallization studies, and research utilizing the cystinuric mouse model first discussed by Dr. Jay Tischfield in Chicago at the 2006 Cystinuria Symposium. In addition to research, dietary concerns specific to cystinuric patients will be discussed, as well as a historical perspective of the disease to recap the last 200 years since the discovery of cystine stones. In addition to Saturday's symposium, we are planning an educational dinner Friday night before the symposium, featuring a surgical update by Dr. Michael Grasso, long time friend of the Foundation. Stay tuned for more details and developments!

We are proud to be hosted by NYU this year, highlighting the recent establishment and funding of the Rare Kidney Stone Consortium (www.rarekidneystones.org) under the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) and the Office of Rare Diseases Research (ORDR). Dr. David Goldfarb, Professor of Medicine and Physiology and Clinical Chief of Nephrology at NYULMC is the principle investigator of the cystinuria component of the consortium.

Advance registration for the event will be requested. Details and a registration form will be posted in the near future. If you would like to be included on the 2010 Cystinuria Symposium update mailing list, please send an e-mail to This e-mail address is being protected from spambots. You need JavaScript enabled to view it .

Dear ICF members, 

Many members of the cystinuric community have expressed an interest in a recurring newsletter. In response to this, the ICF is currently developing a plan to produce a regular publication both in print and online. The exact frequency of the newsletter has yet to be decided, and will largely depend on input from the community and the general response to the project. We would like to ask the members of the community for your input. Specifically, we would like to hear:

1) Your ideas. What topics would *you* like to see covered in a regular newsletter? Are there any areas where information or focus are lacking? Questions unanswered? 

2) Your medical care. We would like to feature one or two doctors who have provided excellent quality of care each newsletter. In doing so, we hope to learn about the standard of care in different areas. Please send the name and contact information of a doctor (general, urologist, nephrologist, etc.) in your area who you believe deserves to be interviewed and featured. By shining the light on what good care can be, we hope to promote a standard to which care in other areas can be compared. 

3) Your stone collections! Yes, we know many of you have them. Some members are famous for them. While the market for rare cystine gems has not yet opened up (a very long-running wish!), we would like to feature these collections as special tangible items that are so often the central thread of our community. 

Please send your recommendations, information, feedback, and questions to  This e-mail address is being protected from spambots. You need JavaScript enabled to view it , or post them in the community forums. Thank you in advance for your time and support of this project!
Kind Regards,
Matt Lewis

Today we are launching the newest edition of the ICF website, unofficially the 4th version since the site's inception in 2002.  It is our hope that the new site design will allow for improved development and publishing of cystinuria-related resources.  Some content and features from the former site may be temporarily unavailable while we are still in the process of updating.  We thank you for your patience in this transition period!