You Are Here: Interstitial Cystitis Network : Privacy Guidelines

Privacy Guidelines

IC Network's Position on Your Privacy.
The IC Network supports in an individual’s right to privacy. We recognize that you trust us to provide quality health information. We apply these same high standards when we protect your personal information in confidentiality and privacy matters.
This statement discloses the privacy policies of the Interstitial Cystitis Network and our affiliated web sites. Questions about this statement should be directed to jill@ic-network.com. Please be aware that the ICN contains links to other web sites. The ICN is not responsible for the privacy practices or content of such web sites.

COPPA
Medical Web Site Standards
Information We Gather or Track
Voluntary Disclosure of Information
What We Do With Collected Information
Opt In or Opt Out Options
IP Address Policies
Deleting or Deactivating Your User Name

Children's Online Privacy Protection Act (COPPA):
The IC Network is NOT intended for the use of children under the age of 13. Our materials are academic in nature and written for young adults, adults and senior citizens with a minimum high school education who are struggling with bladder disease. Parents of children with IC are certainly welcome.

Medical Web Site Standards:

Information We Gather or Track

  • Your computer communicates with our servers via an IP address (Internet Protocol) which tells us your internet service provider.
  • Our automaticed "announcement only" mailing list and Message Board System collects only the country, age and sex of those who sign up for use as we develop new resources for our website.
  • Voluntary IC surveys may ask for information related to your experience and symptoms of IC. To ensure your privacy, we will not ask for any names or email addresses of those who participate. We will assign a random number or designator to identify specific survey results. Survey results will be assessed by ICN staff and/or participating researcher and published via our web site and/or in medical journals.
  • At this time, the ICN does not use "cookies" to collect information from our users. Cookies are only used in our message board system to store password information on our user's browsers.
  • ICN Subscribers and/or customers do submit their name, address and occasional credit card information for shipping and invoicing purposes. This information is kept in the ICN offices in California and will not be sold or distributed for profit.

Voluntary Disclosure of Personally Identifiable Information on Message Boards, Chat Rooms (ICN Conference Center)

  • The ICN Message Boards and Chat Rooms are open to IC patients and providers. Any information that you voluntarily disclose (such as your email address or name) is accessible to any who read the boards. On occasion, individuals and companies may attempt to sell products, services or books on our site. These posts violate our web site Use Guidelines and will be deleted. However, we can not prevent solicitations by e-mail done beyond our control. If you receive a solicitation, please know that this is done without our permission and is a direct violation of our use guidelines.
  • Any communication which you post on the IC Network web site (message boards, chat rooms, guest book), by fax or email to ICN offices is considered to be non-confidential. We do not engage in confidential discussions with patients about their medical care.
  • Our system "hides" personal email addresses automatically to provent the gathering of your email address by robots and/or product promoters.

What We Do with Collected Information.

  • Collected information is only accessible by senior ICN staff.
  • We use mailing list & message board information to create plan and develop new features for our web site.
  • We will use your email information to provide you with newsletters/service updates from our site.
  • Our e-mail list and subscriber/customer lists will not be sold or otherwise transferred to unaffiliated third parties without the Subscriber's or User's prior consent.

Choosing to Opt Out of Information Collection

  • You can opt out of ICN mailings by following the unsubscribe link placed at the bottom of every email.
  • If you are having trouble unsubscribing, please contact jill@ic-network.com

IP Address Policies

  • The IC Network has access to the Internet Protocol (IP) address of your computer when you visit our web site and use our message boards. The IC Network makes no attempt to trace IP addresses UNLESS, in the sole judgement of ICN staff or volunteers:

    (1) an individual is exhibiting suicidal behavior for which ICN staff will try to locate the appropriate medical or law enforcement officials
    (2)
    an individual attempts to disrupt the activities of the ICN message boards, as discussed in section 6 of the ICN disclaimer. This IP address and any identifiable information provided in the message (such as a name, or email address) will be logged and then provided to the appropriate ISP and/or legal representatives for an investigation of that users conduct. An example of a referral is the AOL Terms of Service Staff.

Deleting or Deactivating Your Name

It is not feasible to delete all traces of a Subscriber's or User's activity in our message board system. However, we do offer you the opportunity to delete your email address-the only individually identifiable piece of information about your account - You can do this via the "profile" link at the top of the message board. However, if you do remove your email address, you may not be notified of important changes to the system.


Revised: July 2004

What's New / Site Map / Become an ICN Subscriber
The Interstitial Cystitis Network
URL: www.ic-network.com
All rights reserved.
Copyright © 1995-2004