Welcome to Aniridia Foundation International
We're so glad you found us! For some, your journey with Aniridia syndrome has just started, and others have a whole life full of experiences. Either way, we look forward to you learning and sharing your experiences through Aniridia Foundation International (AFI).
In the past, there was little information and even less research about Aniridia syndrome. Because ophthalmologists did not see many cases, many were unfamiliar with its complexities. AFI felt the key to understanding this genetic congenital eye and medical disorder was to connect those affected by this syndrome with caring physicians and determined researchers.
Take our Hands, Walk with us, Share our Dreams and Help to Make a Miracle!
You Are Not Alone
A whole community of people familiar with what you are going through is here to welcome you and provide help. Connecting with supporter families is just one way of gaining support. We invite you to become an active supporter of the AFI. Becoming a supporter means being part of a dedicated team working toward solutions to benefit the Aniridia syndrome community, making advancements in research, helping improve patient care and, one day, finding a cure. "Take our Hands, Walk with Us, Share our Dreams and Help Make a Miracle!"
The research of Aniridia syndrome is crucial to the Aniridia syndrome community. We have created the AFI Medical Registry where we are currently collecting data and genetic results of those affected. This Medical Registry collects information on both the known and suspected associated
AFI brings our vast knowledge about Aniridia syndrome to our supporters and the public through several events and programs such as hosting our Make a Miracle conferences, exhibiting at national medical and scientific conferences, and publishing our latest findings in our Eye on Aniridia news edition.
In addition to our focus on the latest research and medical advancements, AFI was established to support people who have Aniridia syndrome and their families. Our network of supporters from all over the world share their experiences and can help each other through every stage of their lives.
Learn How You Can Help Or Volunteer
What is Aniridia Syndrome?
Aniridia syndrome is a genetic congenital eye and medical syndrome usually detected at birth. The most noticeable feature is that the baby has dark eyes with no real iris color. Aniridia syndrome is considered a "syndrome" because of its multiple ophthalmic and medical conditions.
In Aniridia syndrome individuals, the underdevelopment of the eye structures involves malformation of the retina, amblyopia, foveal hypoplasia, nystagmus, lens subluxation (dislocation), and macula and optic nerve disease.
The lack of an iris may cause light sensitivity; however, the real problems are the conditions which make up this syndrome that can cause loss of the remaining vision.
Our 2019 Make a Miracle conference, a benefit for our registered supporters, welcomed those with Aniridia Syndrome and their family members (parents, grandparents, etc.), and the top doctors and researchers in the field. The AFI worked diligently to find funding and sponsorships to offset the expensive costs of the conference
The Aniridia Foundation International (AFI) has been busy helping those with Aniridia Syndrome. Some of our tasks completed or underway thanks to our dedicated volunteers and monthly donors are: The AFI awarded another two-year grant to the University of Delaware’s Duncan lab to continue their study on Aniridia Fibrosis Syndrome.
Distance Learning. Remote Learning. E-Learning. Quaranteaching. Whatever words you use to describe it, this school year was likely the most unusual one any of us have ever experienced. With the Coronavirus pandemic in full force, most schools in the United States closed their physical doors in March and pivoted to