New Parent Guide

We know that for some of you, the diagnosis of Aniridia syndrome has come as a complete shock. However, we are here to help you learn, be supportive, and provide advice. We have supporters young and old who were born with Aniridia syndrome and are willing to share their experiences.

Parents and families are also involved and willing to provide support from their perspective. We also have a great resource book about Aniridia syndrome, Aniridia and WAGR Syndrome: A Guide for Patients & Families. The book is available through the Aniridia Foundation International office, Oxford University Press, Barnes & Noble, and Amazon.

Baby with Aniridia

A Message to Remember

It may seem overwhelming now; however, our foundation gives you the tools to succeed. You can learn through our medical conferences where we bring in top doctors experienced in Aniridia syndrome to speak to you. You can receive support by networking with families who have experience with the challenges of Aniridia syndrome. You will meet many children, teens, and adults with Aniridia syndrome who have excelled despite their limited vision helping you understand what your child's life might be like. Grandparents, parents and other relatives are also supporters and can give their very special perspective and support.

Will my baby see?
Child with Aniridia Children with Aniridia syndrome who have not had significant complications often have vision somewhere between 20/80 and 20/200 once their vision matures. It has been observed; however, that it can take some time for an aniridic infant's eyes to "wake up" and fully begin to use their vision. As such, a true sense for how well a child will see may not be fully determined until they are preschool age or even early elementary. So, if you are a parent of an infant, and you are concerned that your child may not be able to see much, please know that this may improve for the first few years of your child’s life.