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. The ICA does not accept advertisement dollars.

Content Development Policy

A team of medical writers creates the content for www.ichelp.org 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.

Copyright: 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, www.ichelp.org, 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 (www.ichelp.org).

Advertising Policy

The ICA does not accept advertisement dollars for either printed publications or the website www.ichelp.org.

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 website policies, privacy practices, or the content of these linked websites.

Privacy Policy

The ICA respects the privacy of website visitors and donors. Information on individual site visitors and donors is requested for purposes such as materials ordering, donation and membership processing, and information requests. The information we may request includes name, street address, city, state, zip code, telephone number, and email address. We collect information about you only if you volunteer it. There are several ways you may volunteer information on the site. These include creating an online account via the “Login” feature, completing a survey, sending an email inquiry to us, contributing online, or registering for or participating in an online or in-person event. We may use this information to contact you for support or donation opportunities and to answer questions you submit to the site.

If you supply us with your postal or email address you may receive periodic mailings from us with information on new programs and services, donation opportunities or upcoming events. The ICA sometimes adds contact information to our mailing lists that is considered to be public information. For example, postal and email addresses of press contacts, government agencies, corporate sponsors, and other entities. Mailing information is included from public access sites such as organization websites. We also routinely add the contact information of key stakeholders—members of boards and working groups, participants of the provider registry, and researchers, healthcare providers, and other key stakeholders.

The ICA is the sole owner of and the only organization that uses the information collected on this site. We do not sell, share, trade, or rent this information to others under any circumstances. The ICA does not send donor mailings on behalf of other organizations.

The “Login” feature of the website permits users and donors to amend or correct the personal information maintained by the ICA and to elect to opt-out of blast emails. Donors and users can also call or write the ICA and request to be removed from the ICA mailing list and/or to not receive fundraising letters, solicitation calls, and emails.

The ICA takes measures to prevent unauthorized access and maintain data security. The ICA has put in place reasonable physical, electronic, and managerial procedures to safeguard the information we collect online. In the event that the ICA makes any changes to its privacy policy, these changes will be posted on the ICA website.

Website Policies

We subscribe to the HON code principles of the Health on the Net Foundation.

The ICA collects Internet Protocol (IP) addresses from website visitors. When you access the Internet, your computer is assigned a number or IP address. When you visit the ICA website, the ICA web server collects from your web server your computer's IP address—which provides your computer’s domain name, operating system, and web browser. The ICA relies on this information to help manage our website; however, your IP address is not linked to any personal identification information. We anonymously track site visits using normal Internet tracking tools to help manage the ICA system and better serve our audience. This information is used for reporting purposes only and includes information such as total number of visits, most visited sections, peak traffic times, browser versions, search terms used, and average duration of visit.

Use of cookies: Cookies are pieces of non-personal information that some websites transfer to the computer that is browsing that website. Cookies are used for record-keeping purposes at most websites. The ICA website may use cookies to enhance your experience while using the site. We use this information to improve our website by evaluating traffic. The ICA does not use cookies to track personal information. Use of cookies makes web-surfing easier by automatically saving your password and personal preferences. Cookies have become an industry standard and your browser probably is set to accept them. If you would prefer not to receive cookies, you can alter the set-up of your browser to refuse them. If you choose to refuse cookies from our website, some areas of our site may not function properly when viewing.

Please feel free to contact us with comments or additional questions at ICAmail@ichelp.org.

Revised October 1, 2014