The AFI is dedicated to advancing research through data collection, participation in research studies and clinical trials, and funding important research. Our research programs focus on:
- Collecting human data from those with Aniridia syndrome to assist scientists with advancing research and treatments for all conditions related to Aniridia syndrome.
- Raising funds to support this research about Aniridia syndrome. Many of the associated conditions of Aniridia syndrome are present in the general public (such as glaucoma, corneal scarring, cataracts, diabetes, Autism Spectrum issues, and the genetics involved). Any research into these conditions not only will help those with Aniridia syndrome but could possibly help many others with these conditions as well.
We are very fortunate to have the tools needed to advance research findings faster and to have many Aniridia syndrome experts on our Medical / Scientific Advisory Council. We need to seize this momentum and show everyone that the AFI supporters are leading the way in pursuing research and patient care advancement.
With the help of our supporters with Aniridia syndrome and their participation in our Medical Registry – with the funding from generous donors wishing to help their loved ones – we can make advances with more research. This is a unique opportunity to make real progress in the lives of those affected by Aniridia syndrome.
The AFI Medical Registry
One of our biggest research projects is The Aniridia Foundation International’s (AFI) Medical Registry. The registry has been partially responsible for some of the latest AS findings, an integral part of published papers in medical and scientific journals, and the reason that many scientists are encouraged to do more research on Aniridia syndrome. Our momentum is growing!
The adults, children or families with multiple aniridic family supporters who participate in our research data collection are dedicated to being part of the solution. They also assist in working towards better treatments, advancing generational research knowledge, and eventually finding a cure for themselves and the children of today and tomorrow.
By collecting data and making the anonymous information available to researchers through an application and approval process, scientists use this data combined with their own animal studies or clinical trials to advance their research. Those who wish to participate and advance the latest research, please contact us to start your own Medical Registry file.
AFI Supporters will be contacted about the latest information on research studies and clinical trials where they may qualify as a participant.
Since Aniridia syndrome is made up of multiple eye and medical issues, the data collected for research will help those with Aniridia syndrome and potentially those in the general public who experience the common ophthalmic and medical conditions found in Aniridia syndrome. These common conditions include glaucoma, cataracts, corneal scarring, ophthalmic fibrosis issues, diabetes/glucose intolerance, obesity, auditory processing disorder, and autism spectrum disorders. We believe the AFI research program will continue to lead to a better understanding of Aniridia syndrome, improving patient care, and leading us closer to a cure.
To participate, please contact our office or postal mail. If you have had your genetic testing done, please mail in a copy of your genetic test results. Please provide your name, phone and the person(s) with Aniridia syndrome so we may contact you. Be sure to attend our Make a Miracle conferences where the research we fund or in which we participate in is shared and updated.
