Legal

Privacy Policy

How we handle the information you share with us through this website.

Effective date: September 11, 2026

The Intermountain Cystic Fibrosis Parents' Advisory Council ("PAC," "we," "us," or "our") respects the privacy of the families, caregivers, and healthcare partners who visit this website. This policy explains what information we collect through icfpac.org, how we use it, and the choices you have.

By submitting a form on this website, you agree to the collection and use of your information as described here. If you have questions, you can reach us any time at [email protected] or through our contact page.

What We Collect

Information We Collect

We only collect information you choose to give us directly, through the forms on this site:

  • Contact form: your first and last name, email address, reason for contact, your message, and whether you'd like to join our mailing list.
  • Event RSVP form: your first and last name, email address, number of guests, and any notes you provide (for example, dietary restrictions or accessibility needs).

We do not collect medical, diagnostic, or other health information through this website. If you choose to mention health details in a message to us, we use that information only to respond to you — it is not treated as part of any medical record, and this site is not affiliated with or covered by your CF care team's medical record system.

We do not use cookies, analytics, or advertising trackers on this site, so we don't collect browsing behavior, device identifiers, or location data beyond what's described above.

How We Use It

How We Use Your Information

  • Responding to your questions or requests
  • Planning and running PAC events, including headcounts and accommodating notes you share (like dietary or accessibility needs)
  • Sending event invites and PAC updates, only if you opt in to our mailing list
  • Keeping basic organizational records of who we've heard from

We do not sell, rent, or share your information with third parties for their own marketing purposes.

Storage & Security

Where Your Information Is Stored

Form submissions are stored using Supabase, a third-party database provider. Access to this data is restricted by security rules (Row Level Security) so it cannot be read directly from your browser or by the general public — only PAC organizers can view it, through Supabase's dashboard.

This website itself is hosted on GitHub Pages, which may log standard technical information (like IP address and browser type) as part of normal web server operation. That logging is handled by GitHub, not the PAC — you can read GitHub's own privacy statement at docs.github.com.

Links to third-party sites from this website — including Facebook, Instagram, and Zoom links for events — are governed by those services' own privacy policies, not ours.

Your Choices

Data Retention & Your Rights

We keep the information you submit for as long as reasonably needed to respond to you, plan event logistics, or maintain our mailing list — or until you ask us to remove it.

You can contact us at any time to:

  • Ask what information we have on file for you
  • Ask us to correct inaccurate information
  • Ask us to delete your information
  • Unsubscribe from the mailing list

Just reach out using our Contact Us form and we'll take care of it.

A Few More Things

Children's Privacy & Policy Changes

Children's privacy: This website is intended for parents, caregivers, and healthcare partners in the CF community. We do not knowingly collect personal information from children under 13 through this site.

Changes to this policy: We may update this policy from time to time as the PAC's website and programs evolve. Any changes will be posted on this page with a new effective date above.

Questions About This Policy?

We're happy to explain anything here in plain language, or help you access, correct, or delete your information.

Contact Us