Privacy

PRPF31.org is run by patients for patients and families. We collect as little information as we can and never sell it.

This Website

This site uses no cookies, no analytics and no advertising trackers. Its text, fonts and images are all served from this site. If you choose a larger text size, that choice is saved only in your own browser.

The site is hosted on GitHub Pages. Like most web hosts, GitHub may record visitors' IP addresses for security purposes, as described in the GitHub General Privacy Statement.

Our Facebook Group

Our private group is hosted by Facebook and governed by Meta's own privacy policies. The answers to the joining questions are seen only by the group's admins. Members agree to keep what is shared in the group private to the group.

Updates Sign-Up

If you sign up for updates, we use the details you give us only to send you news about research studies, clinical trials and PRPF31. Sign-ups are collected with Google Forms and kept in a Google account controlled by PRPF31.org. We will never sell your details or share them without your permission. You can ask to be removed at any time.

Contact

To ask a question, or to have your details removed, message us on Facebook.

This policy is written in good faith by volunteers and has not yet been reviewed by a lawyer. Last updated: October 11, 2026.