Our Privacy Policy

The IC Network supports your 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.

Resale or Disclosure of Information To Third Parties

The IC Network Website does not sell, rent, loan, trade or lease any personal information collected on our site, including our email lists. We will, on occasion, send out materials to our mailing list related to clinical trials or new products of interest, however we maintain control of our lists completely. No sponsor is given access to our lists. You may unsubscribe at anytime from our lists by following the links at the bottom of each email.

ICN Family of Websites


  • The IC Network promotes third party research studies and clinical trials related to interstitial cystitis, bladder pain, chronic pelvic pain and other related conditions. Formal research studies may request that participants complete an eligibility survey and/or contact their office directly if they are interested in participating. If you choose to participate in a study promoted through our website, we encourage you to review their privacy policies as well.
  • The ICN also promotes internal research studies and surveys to help us learn more about the critical needs and trends in the patient community. These surveys are “opt in” and rarely collect personal information, other than sex, age and your general location.

Information We Collect or Track

  • IP Address – Your computer communicates with our servers via an IP address (Internet Protocol) which tells us your internet service provider.
  • Cookies – The ICN does not use “cookies” to collect information from our users other than to store user name and password information on our user’s browsers.
  • Log Files –  “Log files” track actions occurring on our sites, and collect data including your IP address, browser type, Internet service provider, referring/exit pages, and date/time stamps.
  • ICN Support Forum – Our automated mailing list (facilited by Constant Contact) and Support Forum (aka Message Board) System collects only basic information (country, state, sex, age) of those who sign up for use as we develop new resources for our website.
  • ICN Shop – 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.
  • ICN Survey Center – 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 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.
  • ICN Food Apps (iOs, Android) – These are informational apps that collect no user data or information, other than a purchase that is made to the appropriate app store.

Voluntary Disclosure of Personally Identifiable Information

  • The ICN Support Forum is open to IC patients and providers. Any information that you voluntarily disclose (i.e. your first name, user name, and/or information you include in your signature file) is accessible to any who read the boards. We encourage you to not post any personally identifiable information, including your full name, location, phone numbers and/or e-mail addresses. Your personal safety is essential.
  • On occasion, individuals and companies may attempt to sell products, services or books on our site. These posts violate our web site Terms of Use and will be deleted. However, we can not prevent solicitations by users who are using the forum private messaging service. If you receive a solicitation via private message, please know that this is done without our permission and is a direct violation of our use guidelines. Please forward that information to forum@ic-network.com so that we may review the solicitation and take action to warn and/or block that user.
  • We do not engage in confidential discussions with patients about their medical care.  Any communication which you post on the IC Network web site (message boards), or send by fax or e-mail to ICN offices is considered to be non-confidential.
  • Our forum system “hides” personal email addresses automatically to prevent the gathering of your email address by robots and/or product promoters. If you send a private message to another user, you will not be able to see or collect their personal e-mail address.

What We Do with Collected Information.

  • All ICN Websites – Collected information is only accessible by senior ICN staff.
  • All ICN Websites – We use mailing list & message board posts to understand our users need and develop new features for our web site.
  • All ICN Websites – We will use your email information to communicate with you (i.e. newsletters/service updates).
  • ICN Shop – We use the Order Information that we collect generally to fulfill any orders placed through the Site (including processing your payment information, arranging for shipping, and providing you with invoices and/or order confirmations).
  • ICN Shop – When you place an order through our site, we will maintain your order information for our records and as required by law.
  • ICN Shop – We screen orders for potential fraud. As an example, we occasionally have customers who attempt to use stolen credit cards. This is often identified when they use a variety of different credit card numbers to process large orders. In these cases, we will contact our merchant account to determine if these were stolen credit cards, etc.
  • IC-Network.com – Survey data collected is used for research purposes.

Sharing Your Personal Information

  • 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.
  • We use Google Analytics to help us understand how our customers use the Site–you can read more about how Google uses your Personal Information here:  https://www.google.com/intl/en/policies/privacy/.  You can also opt-out of Google Analytics here:  https://tools.google.com/dlpage/gaoptout.
  • We use Constant Contact to manage your email and subscriptions. You can read their privacy policy here!
  • 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
  • We retain the right to provide any information we know about you to legal authorities in the event of legal action arising from your online activity. We may also share your personal information to comply with applicable laws and regulations, to respond to a subpoena, search warrant or other lawful request for information we receive, or to otherwise protect our rights.

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 hack our website and/or disrupt the activities of our website. 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 change your user name and/or 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.

If there are any posts in our support forum that you would like deleted, please send us the links to the posts that you would like deleted or modified to: jill@ic-network.com. You may also call us directly for prompt action!


The IC Network does occasionally advertise through various social networking channels (Facebook, Google, Bin, Twitter, etc.) You can opt out of targeted advertising by visiting:

Additionally, you can opt out of some of these services by visiting the Digital Advertising Alliance’s opt-out portal at:  http://optout.aboutads.info/.

Database Content

The Interstitial Cystitis Network website operates with two primary databases, one for our educational content and one for our support forum. The forum database contains posts, registration info, private messages, logged IPs and other activities. The information contained within the database belongs to Interstitial Cystitis Network. An administrator of the ICN can access information in the database, including: posts, IPs, private