Ownership of Site

contact@ikcc.org will reach the administrator (Julia Black) of all content on this site.  All original medical content is reviewed by Dr. Rachel Giles, M.D., Ph.D., University of Utrecht, and other medical advisors.


The content of this website should not be taken nor relied upon as medical advice on how to treat your specific manifestation of this condition. Rather, by providing context and understanding, we hope that the information provided on this website will empower the patient to be a better partner in his or her own care and will facilitate constructive conversations between patient and physician. This website is intended to add to, not replace, conversations between a patient and a physician, as the specific details and the patient’s total health situation need to be considered in making the final decisions about treatment.


Personal details, including e-mail addresses, that you provide to the IKCC are kept entirely confidential. These details are shared within this community of organizations among staff and volunteers for the purpose of providing service to you, but are never shared with, rented or sold to other organizations. All staff and volunteers have made confidentiality agreements to protect your information. To verify your information or send corrections, please contact us. 

Information you submit to us voluntarily through this website is stored on our secure server using SSL encryption technology.

Computer Tracking and Cookies

This website is not set up to track, collect or distribute personal information not entered by visitors. Our site logs do generate certain kinds of non-identifying site usage data, such as the number of hits and visits to our sites. This information is used for internal purposes by technical support staff to provide better services to the public and may also be provided to others, but again, the statistics contain no personal information and cannot be used to gather such information.

This website also recognizes the online site where a visitor searched to find a subject which brought them to the IKCC website, but we cannot identify the visitor or the visitor’s address. Site information is used to help us serve these search sites with the correct information about our material. No personal information is collected.

A cookie is a small amount of data that is sent to your browser from a Web server and stored on your computer’s hard drive. IKCC does not use cookies in its web pages. We do not generate personal data, do not read personal data from your machine and do not store any information other than what you voluntarily submit to us.

Google Analytics

Currently we are using Google Analytics to analyze the audience of the website and improve our content. No personal information is collect from Google Analytics. For further information on the privacy policy concerning Google Analytics, please go here, https://www.google.com/policies/privacy/

Problems or Complaints with IKCC Privacy Policy

If you have a complaint about IKCC compliance with this privacy policy, you may contact us at contact@ikcc.org

Links to Third Party Sites

The links included within the service may let you leave this site. The linked sites are not under the control of IKCC, and IKCC is not responsible for the contents of any linked site, or any link contained in a linked site, or any changes or updates to such sites. These links are provided as a convenience only, and the inclusion of any link does not imply endorsement by IKCC of the site or any association with their operators.

Advertisement Policy

Our website does not host any form of advertisement.  Our funding is received as unrestricted education grants from multiple pharmaceutical companies, in equal amounts, as disclosed on our Sponsors page.  None of these sponsors controls the content of this site.

If you have technical questions about this site, please contact: contact@ikcc.org