AFI Medical Registry

The AFI Medical Registry collects data from people with Aniridia Syndrome to help advance research for better vision-saving treatments and, ultimately, a cure. We need your participation in the AFI Medical Registry to make a significant difference in research and clinical care. For over a decade, the AFI has collected human data and genetics via paper sources for multiple research studies and a clinical trial. Now, we are committed to making it easier for you to enter and update your data and provide helpful tools for you to use and share with your doctors.

Helpful Tool

The AFI Patient and Physician Helper is a valuable LIFETIME INVESTMENT tool to assist you in:

  • Keeping important information organized and at your fingertips when needed.
  • Making it easy to maintain and update your or your child’s Medical Registry file.
  • Helping with your physician or ophthalmologist appointments.
  • Assisting our researchers with your de-identified data to advance Aniridia Syndrome research

Registered Supporter Private Forum


With all the breaches of information in social media sites like Facebook, many people, some of whom do not use any social media for this reason, have asked us to create a private forum area for our registered supporters. This is so they may share personal information or ask questions about issues related to Aniridia Syndrome in a friendly setting of others who truly understand their Aniridia Syndrome journey and without advertising it to the public. It is especially important for them when talking about their children with Aniridia Syndrome.

We encourage people to share and ask questions, however, please know the following:

  • The information contained on this website is presented for information/educational purposes only. Nothing contained on this website should be construed as, nor is intended to be used for medical advice, diagnosis or treatment. For questions answered by AFI, we have consulted with some of our Medical / Scientific Advisors to make sure information is correct.

Terms of Use

Out of common courtesy and respect for those sharing personal information, experiences etc., anything that is posted in this private area should not ever be shared outside of this area. While we recognize everyone has different opinions on the realities of Aniridia Syndrome, no posts will be accepted that contain negativity or judgement toward others.

Sharing, copying articles, photos and/or our trademarked logo is prohibited. Materials on this website may not be reproduced, displayed, or published in other Facebook or social media sites, websites, blogs, newsletters, or other media without prior written permission of Aniridia Foundation International (AFI).

Private forum access areas for the Circle levels are:
Stargazer Circle – access to the forums
Angel, Guardian Angel, and Archangel Circles – access to the forums, article library and (coming soon) chat or special presentations.