Usa Aniridia Network

Programs: Afi "make a miracle" conferences, educational and support programs: the afi "make a miracle" educational conferences are unique. For those with aniridia syndrome, we bring in top physicians and researchers to present to the families and individuals with aniridia the latest information about their genetic disorder. These professionals also have meetings of their own to discuss, share and brainstorm as they typically attend their own medical or scientific meetings. This conference gives them that opportunity. After the medical and scientific presentations end there is support, networking and discussion groups for those affected. At some of the conferences, we provide a free "see the experts" eye clinic in which our afi medical board volunteers their time to examine and provide critical knowledgeable care for those with aniridia syndrome. Over the years this has saved a many people's vision as their problems were not diagnosed or properly treated by their local doctors who were not aware of current aniridia syndrome issues. While the parents are listening to the professional's presentations, we have a child care and teen program whee they have fun, learn important coping skills and meet their peers who also have aniridia syndrome making life long friendships and support systems. Our parent support discussions are helpful because having a child or children with this inherited genetic disorder can be emotionally and financially draining. It always helps to have someone who has walked in your shoes there to understand. The book "aniridia and wagr syndrome: a guide for patients and their families is one of the educational tools we offer to those wanting answers and hope. Along with a website, facebook and twitter presence, we will be opening a private discussion area so those affected can share more privately about their personal experiences or issues amongst themselves to find answers and support. Various volunteers offere special counseling from career based areas and those who have lived with aniridia themselves. Afi also helps those affected by paying for their genetic testing (pax6 sequencing) which can be very expensive even with insurance. This informaiton will become more important as the medical and research community move towards treatments and hopefully a cure through genetics. Knowing what your mutation related to aniridia is will benefit those we help and even more so in the future.

professional and public awareness and learning afi collaborates with the medical and research community and spreads awarenesss: afi attends medical and scientific conferences such as american association of ophthlamology (aao), association of research and vision in ophthalmology (arvo) and other vision related meetings. The information gained at these meetings helps us keep our information current and the information provided to the medical or scientific attendees spreads awareness of this genetic syndrome and provides important information for their patients. The director / founder of afi is an internationally known invited guest speaker at medical, scientific and vision related meetings educating and promoting aniridia syndrome. She is an accomplished author on this genetic disorder and has created awareness through networking at these meetings.

research afi has been a leader in facilitating aniridia syndrome research through two avenues: 1. Providing funding for various aniridia related research studies either as sole funders or as co-funders partnering with other vision organizations. 2. Collecting important human data from those with aniridia syndrome who voluntarily provide their data as they wish to help work towards better treatments to retain vision and a cure. The afi medical registry program accepts data from them and then it is de-identified before researchers receive this data. Researchers who wish to have this human data to compare to their animal models must go through a vetting process involving opinions from our medical and scientific advisors.