Privacy & Website Policies

The Interstitial Cystitis Association (ICA) is a US registered 501(C)3 voluntary health agency. The ICA is the only nonprofit organization solely dedicated to finding a cure and more effective treatments for interstitial cystitis (IC).

The ICA does not engage in the practice of medicine. It is not a medical authority nor does it claim to have medical knowledge. In all cases, the ICA recommends that you consult your own physician regarding any course of treatment or medication. Our comments are based on professional advice, published experience, and expert opinion, but do not represent therapeutic recommendation or prescription. For specific information and advice, please consult your personal healthcare provider.

The ICA receives contributions from corporations and foundations who support our work. We gratefully accept these contributions with the clear understanding that we retain full responsibility for, and control of, the shape and substance of our programs and activities, including editorial rights and health messages of all of the content of this site. Our supporters do not in any way dictate the content of our work.

Advertising Policy

The ICA website does contain links to other sites, including commercial sites. The ICA links to the sites of corporate and foundation funders who provide grants in support of ICA programs and services. We may also link to helpful products for people with IC, as well as websites for many of the pharmaceutical companies and other manufacturers of drugs and other treatments. Reference to a commercial or non-commercial product, process, service, or company is not an endorsement or recommendation by the ICA. The ICA does not endorse or recommend products, services, or manufacturers, and assumes no liability whatsoever for the use or contents of any product or service mentioned. The ICA is not responsible for their website policies, privacy practices, or the content of these linked websites.

Privacy Policy

The privacy policy ( “Privacy Policy”) forms part of the Terms and Conditions of use of the Interstitial Cystitis Association (“ICA,” “we,” or “us,” or “our”) website,, online community ICA Connect,, and mobile app, whether accessed via computer, mobile device or other technology, and any associated content, material, or functionality contained therein (collectively, the “Site”). This Privacy Policy describes what information ICA collects about you on our Site, how we use the information we collect on our site, and your options regarding information we may collect about you. If you have questions about this policy, please feel free to contact us at:

Interstitial Cystitis Association, 7918 Jones Branch Drive, Suite 300, McLean, Virginia 22102 USA Tel: +1.703.442.2070; Fax: +1.703.506.3266; Email:

ICA Privacy Policy

This privacy policy sets out how ICA uses and protects any information that you give ICA when you use the Site.

ICA is committed to ensuring that your privacy is protected. Should we ask you to provide certain information by which you can be identified when using this Site, then you can be assured that it will only be used in accordance with this privacy statement.

We encourage you to become familiar with the terms and conditions of this Privacy Policy. By accessing and using the Site, or any part thereof, you agree that you have read and understand this privacy policy and that, in exchange for access to the Site, you accept and consent to the privacy practices and the uses and disclosures of information that are described in this privacy policy.

Changes to our Privacy Policy

We may change this Privacy Policy at any time. The most recent version of the Privacy Policy is reflected by the version date located at the bottom of this Privacy Policy. All updates and amendments are effective immediately upon notice to you, which we may give by any means, including, but not limited to, by posting a revised version of this Privacy Policy or other notice on the Site. You should review this Privacy Policy often to stay informed of changes that may affect you. Our electronically or otherwise properly stored copies of this Privacy Policy shall each be deemed to be the true, complete, valid, authentic, and enforceable copy of the version of this Privacy Policy.

What we collect

ICA collects information in two ways: (i) directly from you and (ii) automatically as a result of your use of the Site, in accordance with the sections below. The information ICA collects, either from you or automatically, will be collectively referred to as “Collected Information” throughout this Privacy Policy.

ICA may collect the following information:

  • name and job title
  • contact information including email address
  • demographic information such as mailing address, postcode, preferences and interests
  • other information relevant to surveys and/or offers

Information We Collect Directly from You

From Visitors to the Site

When you visit our site, or contact us by email or by using a web form, we may collect personal information about you, including but not limited to: contact information, such as your name, job title, home or other physical address, email, telephone number and any other information you choose to provide.

From Visitors who make a donation or purchase on the Site

When you place an order using the Site, we may collect personal information about you, including but not limited to: contact information, such as your name, job title, home or other physical address, email, telephone number; credit card information; and any other information you choose to provide.

Information We Collect Automatically

ICA may also collect information regarding how you interact with the Site, which may include pages you view, selections you make on the Site, features you use, preferences you set, your web browser type and version, the operating system type and version of the device you are using to access the Site, the Internet protocol (IP) address of the device you are using to access the Site (or any portion thereof), physical location, and Internet service provider.

ICA collects cookies on our website to capture information about page visits. A cookie is a small file which asks permission to be placed on your computer's hard drive. Once you agree, the file is added and the cookie helps analyze web traffic or lets you know when you visit a particular site. Cookies allow web applications to respond to you as an individual. The web application can tailor its operations to your needs, likes and dislikes by gathering and remembering information about your preferences.

This information is anonymous and we use this information only internally—we never give away information about our users—to deliver the most effective content to our visitors. Information from the cookies is used to gauge page popularity, analyze traffic patterns on our site and guide development of other improvements to our site. If you choose to e-mail us and provide personally identifiable information about yourself, we will use this information only to respond to your inquiry. We will not sell, rent or otherwise disclose that information to third parties.

Cookies help ICA provide you with a better website, by enabling us to monitor which pages you find useful and which you do not. A cookie in no way gives us access to your computer or any information about you, other than the data you choose to share with us.

You may be able to opt-out of the automatic collection of some information by referring to your web browser’s or mobile device’s options or settings menu. However, doing so may disable many of the portions, features, or functionality of the Site. For example, most web browsers automatically accept Cookies, but you have the choice to set your browser to accept or decline Cookies.

Most browsers allow you to refuse to accept cookies and to delete cookies. The methods for doing so vary from browser to browser, and from version to version. You can however obtain up-to-date information about blocking and deleting cookies via these links:

All About Cookies:
Internet Explorer:

Links to Other Websites

The ICA Site often contains links to other websites and social media platforms (collectively, “Linked Sites”). Once you have used these links to leave our site, ICA is not responsible for the security of any Linked Sites, such other sites, nor for the terms of use or privacy/security policies of any Linked Sites, even if you link to them from our Site. This Privacy Policy does not apply to any Linked Sites. It is your responsibility to review the Linked Sites for policies and practices of concern to you. Furthermore, any information, communications, or material of any type or nature that you submit to any of our pages contained on a social media platform or website by email, posting, messaging, uploading, downloading, or otherwise is done at your own risk and without any expectation of privacy. ICA is not responsible for the privacy statements or other content on sites outside of the ICA website.

How We Use and Share the Information We Collect

ICA collects and uses your personal information to operate the Site and deliver the services you have requested. ICA shares information with its service providers or agents who provide services to ICA or on our behalf, including without limitation, for the development, hosting and maintenance of the Site and for payment processing.

ICA uses your personally identifiable information to inform you of other products or services available from ICA and its affiliates. ICA may contact you via surveys to conduct research about your opinion of current services or of potential new services that may be offered.

ICA collects information to process your payment if you make a donation or place an order using the Site.

ICA may share data with trusted partners to help us perform statistical analysis, send you email or postal mail, provide customer support, or arrange for deliveries. All such third parties are prohibited from using your personal information except to provide these services to ICA, and they are required to maintain the confidentiality of your information.

ICA does not use or disclose sensitive personal information, such as race, religion, or political affiliations, without your explicit consent.

ICA keeps track of the Sites and pages our customers visit within ICA, in order to determine what ICA services are the most popular. This data is used to deliver customized content and advertising within ICA to customers whose behavior indicates that they are interested in a particular subject area.

ICA sites will disclose your personal information, without notice, only if required to do so by law or in the good faith belief that such action is necessary to: (a) conform to the edicts of the law or comply with legal process served on ICA or the site; (b) protect and defend the rights or property of ICA; and, (c) act under exigent circumstances to protect the personal safety of users of ICA, or the public.

Your Choices

We provide you with the opportunity to update and/or delete certain information and to opt-out of having information collected, used, or disclosed for certain purposes.

Personal Information and Communications. You may:

  • correct, update, and delete your online account, if you have one;
  • change your choices for subscriptions and certain communications from within your online account;
  • choose whether to receive promotions and offers from us from within your online account; and/or
  • request that we do not share your personal information with third parties.

You may exercise such choices by contacting us via your online account, the Contact Information provided at the end of this Privacy Policy, or by following instructions provided in communications sent to you.

Because we plan our communications in advance, it may take a few days for your request to become effective. If you continue to receive our communications after expressing an opt-out preference, please let us know so that we can investigate the situation.

If you have previously agreed to us using your personal information for direct marketing purposes, you may change your mind at any time by writing to or emailing us at

You may request details of personal information which we hold about you under the Data Protection Act 1998. If you would like a copy of the information held on you please write to Interstitial Cystitis Association, 7918 Jones Branch Drive, Suite 300, McLean, VA 22102 or email

If you believe that any information we are holding on you is incorrect or incomplete, please write to or email us as soon as possible, at the above address. We will promptly correct any information found to be incorrect.

How We Protect Collected Information

ICA secures your personal information from unauthorized access, use or disclosure. When personal information (such as a credit card number) is transmitted, it is protected through the use of encryption, such as the Secure Socket Layer (SSL) protocol.

Your Rights

Your principal rights under the data protection law are:

  • the right to access;
  • the right to rectification;
  • the right to erasure;
  • the right to restrict processing;
  • the right to object to processing;
  • the right to object to data portability;
  • the right to complain to a supervisory authority; and
  • the right to withdraw consent.

California Privacy Rights

Under California law, California residents have the right to request in writing from businesses with whom they have an established business relationship, (a) a list of the categories of personally identifiable information, such as name, e-mail, and mailing address, and the type of services provided to the customer, that a business has disclosed to third parties (including affiliates that are separate legal entities) during the immediately preceding calendar year for the third parties’ direct marketing purposes and (b) the name and address of all such third parties. To request the above information, please email us at: with a reference to California Disclosure Information.

California and Delaware “Do Not Track” Disclosures

California and Delaware law require ICA to indicate whether it honors “Do Not Track” settings in your browser concerning targeted advertising. ICA adheres to the standards set out in this Privacy Policy and does not monitor or follow any Do Not Track browser requests.

Using the Site from outside the United States

If you are visiting the Site, or any part thereof, from outside of the United States of America, please be aware that your information may be transferred to, stored or processed in the United States, where our servers are located and our central database is operated. By using any portion of the Site, you understand and consent to the transfer of your information to our facilities in the United States and those third parties with whom we share it as described in this Privacy Policy.

Last Updated

This Privacy Policy was most recently updated in May 2018.

Content Development Policy

A team of medical writers creates the content for and ICA printed publications. As much as possible, the team pulls from scientific reference materials and provides objective, science-based content. At times, when the science is lacking, the ICA reaches out to experts in the field for anecdotal evidence based on clinical and research experience. In addition, anecdotal evidence from patients may be included. The medical writing team follows editorial policies including peer review by at least two writers with an expertise in interstitial cystitis. The ICA makes every effort to confirm the foundation of anecdotal evidence, asking members of the ICA Medical Advisory Board to review content, as needed.


All information on this site is the property of the Interstitial Cystitis Association. All rights reserved. Written permission is required to copy or quote from this site,, for commercial and non-commercial purposes. If written permission is granted, intended meaning must be preserved and proper credit given to the ICA (and author is applicable), including the Interstitial Cystitis Association's postal address (7918 Jones Branch Drive, Suite 300, McLean, VA 22102), and website URL (


The names of actual companies and products mentioned herein may be the trademarks of their respective owners.

The example companies, organizations, products, people and events depicted herein are fictitious. No association with any real company, organization, product, person, or event is intended or should be inferred.

Any rights not expressly granted herein are reserved.

Notices and Procedure for Making Claims of Copyright Infringement

Pursuant to Title 17, United States Code, Section 512(c)(2), notifications of claimed copyright infringement under United States copyright law should be sent to Service Provider’s Designated Agent. ALL INQUIRIES NOT RELEVANT TO THE FOLLOWING PROCEDURE WILL RECEIVE NO RESPONSE. See Notice and Procedure for Making Claims of Copyright Infringement.