Effective Date: April 1, 2026

The Interstitial Cystitis Association (“ICA,” “we,” “us,” or “our”) is committed to protecting your privacy and maintaining your trust. This Privacy Policy explains how we collect, use, disclose, and safeguard your information when you visit our website, ichelp.org, or engage with our services.

We may collect the following types of information:

• Personal Information You Provide
  • Name
  • Email address
  • Mailing address
  • Phone number
  • Payment and billing information (for donations)
  • Any information you provide through forms, surveys, or communications with us
• Health-Related Information (if voluntarily provided)
  • In some cases, you may choose to share information related to interstitial cystitis/bladder pain syndrome (IC/BPS), such as through support forms or surveys. This information is always voluntary.
• Automatically Collected Information
  • IP address
  • Browser type and device information
  • Pages visited and time spent on our site
  • Referring website

We use your information to:

• Process and acknowledge donations
• Communicate with you about programs, advocacy efforts, and educational resources
• Send newsletters and updates (you may opt out at any time)
• Respond to inquiries and provide support
• Improve our website, services, and outreach efforts
• Comply with legal and regulatory requirements

The ICA deeply values the trust of our donors and is committed to respecting donor privacy.

• We do not sell, rent, trade, or share donor information with outside organizations for their marketing purposes.
• Donor information is used solely for internal purposes, such as processing gifts, issuing receipts, and keeping you informed about our work.
• Donors may choose to give anonymously.
• Donors may request to review, update, or remove their information from our records at any time by contacting us.

We do not sell your personal information. We may share your information with:

• Trusted service providers (such as payment processors, email platforms, and website hosting providers) who assist us in operating our website and services
• Legal authorities when required by law or to protect our rights and safety

All third-party providers are expected to maintain the confidentiality and security of your information.

We use cookies and similar technologies to:

• Enhance your browsing experience
• Analyze website usage and trends
• Remember user preferences

You can control cookie settings through your browser. Disabling cookies may affect some website functionality.

We implement reasonable administrative, technical, and physical safeguards to protect your information. While we strive to protect your data, no internet transmission or storage system can be guaranteed to be 100% secure.

Depending on your location, you may have rights regarding your personal information.

General Rights

You may:

• Opt out of receiving marketing emails at any time
• Request access to the personal information we hold about you
• Request corrections or updates to your information
• Request deletion of your personal data, where applicable

Certain states, including California, Virginia, Colorado, Connecticut, and Utah, provide residents with additional privacy rights.

If you are a resident of one of these states, you may have the right to:

• Request access to the personal information we collect about you
• Request deletion of your personal information
• Request correction of inaccurate information
• Opt out of the sale or sharing of personal data (note: ICA does not sell personal data)
• Limit the use of sensitive personal information, where applicable

To exercise any of these rights, please contact us using the information below. We will respond in accordance with applicable laws.

Our website is not intended for children under the age of 13, and we do not knowingly collect personal information from children.

Our website may contain links to third-party websites. We are not responsible for the privacy practices or content of those external sites.

We may update this Privacy Policy periodically. Any changes will be posted on this page with an updated effective date.

If you have questions about this Privacy Policy or wish to exercise your rights, please contact us:

Interstitial Cystitis Association
388 S Main St, Suite 440 – #157
Akron, OH 44311
Phone: (720) 515-1411
Email: ICAmail@ichelp.org