Last updated January 1, 2013
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Thank you for visiting our Site. This privacy policy tells you how we use personal information collected at this Site. Please read this privacy policy before using the Site or submitting any personal information. By using the Site, you are accepting the practices described in this privacy policy. These practices may be changed, but any changes will be posted and changes will only apply to activities and information on a going forward, not retroactive basis.

Note: The privacy practices set forth in this privacy policy are for this Site only. If you link to other web sites, please review the privacy policies posted at those sites.

Information Collected and Stored Automatically
When you visit our Site to browse, read pages, or download information, we automatically collect and store the following information:

  1. The Internet domain and IP address from which you access our portal;
  2. The date and time you access our site;
  3. The files requested and pages you visit; and
  4. If you linked to from another Web site, the address of that Web site.

We use this information to determine how effective our site is, ways that we can improve, how people find our site, and what pages people are most interested in.  This information is used for internal purposes only.   

This site collects cookies.  See for more information about cookies.

Information that You Choose to Provide
To use this Site’s Bulletin Boards, you are required to register and provide a User ID and a valid email address.  Other information may be provided voluntarily.  If you use your real name as your User ID (or otherwise reveal your true identity within Bulletin Board postings) your association with ichthyosis may be picked up by various internet search engines.  In this case, persons performing an internet search on your name may find search results that point to this Bulletin Board and your postings. Users of this site’s Bulletin Boards often post very personal information regarding their life with ichthyosis.  If you would be uncomfortable if co-workers, potential clients, neighbors, or others were to find your postings on these Bulletin Boards by performing an internet search on your real name, then you should register on this site’s Bulletin Boards with a User ID other than your real name.

We do not provide, sell, or lease personally identifiable information to any third parties.  As an exception, to protect Site visitors and the general welfare, the Site will release personal information when necessary in order to comply with the law or regulatory authorities.

Web Site Security
For web site security purposes and to ensure that this service remains available to all users, this computer system employs software programs to monitor network traffic to identify unauthorized attempts to upload or change information, or otherwise cause damage.