We Need Your Help
The core of AFI is centered on research-based projects such as our largest and most important project, the AFI Medical Registry. In addition to helping those with Aniridia syndrome, this program helps to advance research for various early onset conditions which make up Aniridia syndrome such as: childhood glaucoma and cataracts, retinal issues, corneal disease, low vision, diabetes, autism spectrum disorders, metabolic disorders and obesity.
Having collaborations world-wide, collecting patient data, and working closely with our AFI Medical and Scientific advisors we can make huge strides with your help. We welcome you to join us and see how our team efforts can assist the low vision community, make advancements in Aniridia syndrome research, improve patient care and one day develop a cure. Join AFI Today!
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.
We appreciate the work of partnering researchers who work to better the lives of those with Aniridia syndrome and investigate the conditions which make up this genetic congenital eye disorder. Between funding research, participating in research or assisting with clinical trials we have created many relationships to help the Aniridia syndrome community.
AFI research collaborations include:
- The Ataluren clinical trial for nonsense mutations (genetic mutation in a DNA sequence)
- Genetic sequencing and whole genome research
- Aniridia Fibrosis Syndrome (AFS)
- Metabolism/weight and sleep (circadian rhythm) studies
- Co-funded Aniridia syndrome research projects with Fight for Sight
- Multiple peer reviewed journal articles from our Medical Registry data
Our goal is to continue to collaborate with and/or fund researchers who are conducting research on conditions related to Aniridia syndrome. If you are a researcher interested in getting involved with our Medical/Scientific Advisory Council or applying for funding of your project, please contact us.
Support AFI Research Initiatives
Please help the AFI support these important research initiatives by helping to fund important research – we can advance our knowledge, have physicians find better treatments, and work towards eliminating Aniridia syndrome in future generations. Your donations are tax deductible. Becoming a monthly donor is appreciated as every little bit helps if we all work together. Donate to AFI or support advancement as a monthly donor.