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.

Revisions to this Privacy Policy

We reserve the right to change this Privacy Policy as necessary. If and when we change this policy, it will be updated on this document. We suggest that you review this policy on occasion.

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.

Research

  • 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 location.

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 automated “announcement only” mailing list (facilited by Constant Contact) and Message Board System collects only basic information (country, sex, age) 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 user name and 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 Support Forum 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. 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 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 e-mail to ICN offices is considered to be non-confidential. We do not engage in confidential discussions with patients about their medical care.
  • Our forum system “hides” personal email addresses automatically to provent the gathering of your email address by robots and/or product promoters.

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 messages. We rarely access personal accounts unless a critical event has occurred, such as if the member has died. At that point, we may disable that account and post a message to that members friends about the death.

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.
  • Survey data collected is used for research purposes.
  • 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.

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.

Linking to Third Party Sites

To provide relevant information not found on our Website and to facilitate online shopping, the IC Network may provide links from our Website to third party websites. We encourages our users to read third party sites’ privacy policies before submitting personal information.

ICN Shop On-line Store

Visitors purchasing goods and services through the ICN Shop online store will need to provide a valid credit card number and expiration date, in addition to name, mailing address, phone number and e-mail address in our safe, secured, encrypted online environment. The credit card information is used for the moment of transaction only and not saved in a customer account NOR saved to the server’s database.

Children’s Online Privacy

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 and pelvic pain conditions. Parents of children are certainly welcome to participate.

Acceptance of This Policy

By using the Website, you expressly consent to the use and disclosure of information as described in this Privacy Policy. Your continued use of the Website after the effective date of any modification to the Privacy Policy will be deemed to be your agreement to the changed terms.

California Residents

California Civil Code Section 1798.83 permits our users who are California residents to request and obtain from us once a year, free of charge, information about the personal information (if any) we disclosed to third parties for direct marketing purposes in the preceding calendar year. If applicable, this information would include a list of the categories of personal information that was shared and the names and addresses of all third parties with which we shared information in the immediately preceding calendar year.

At this time, the ICN does not disclose any personal information to any third parties for marketing purposes.

Created – 2009, Revised: June 10, 2014