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Cystinuria Newsletter in development
Date : 01 March 2010
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Cystinuria Newsletter in development

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  newsletter@cystinuria.org, or post them in thecommunity forums. Thank you in advance for your time and support of this project!
Kind Regards,
Matt Lewis