Privacy Policy

Print Friendly, PDF & Email

The Cystinosis Research Network (CRN) is committed to protecting your privacy. The following summarizes our privacy policies, to include issues of confidentiality.

Your Information

All information submitted to CRN using any online input and order forms is kept private. We take every precaution to protect our users’ information both online and off-line.


CRN is firmly committed to the principle of confidentiality of information for its activities and programs. CRN Board Members, Advisory Board Members, and other volunteers have an obligation to respect the privacy of all personal information. Furthermore, this obligation extends to protecting and maintaining the confidentiality of all information derived from surveys, studies, databases, or organizational activities.

Other Sites

CRN’s website links to other websites. CRN is not responsible for the privacy practices or the content of these sites.

Public Forums

This site makes forums available to its users. Please remember that any information disclosed in these areas may become public information and you should exercise caution when deciding to disclose personal information.

Web Log Files

CRN’s website is designed to collect a variety of technical information regarding traffic to our site. Information such as IP addresses are collected in order to analyze volume, trends, and administer the site. IP addresses are not linked to personally identifiable information.