She Made Canadian Medical History When She Received a ‘Bionic Eye’
Orly Shamir made Canadian medical history when she became the first person in the country to receive a bionic eye. In...
Science Education
Human Genome Project: Critical to Modern Gene Therapy Success
The long and sometimes uncompromising road to completing the Human Genome Project (HGP) paved the way for today’s surge in genetic therapy, Dr....
Diagnosis to Treatment: Pioneering LCA Patient Eases the Journey
As a global advocacy organization dedicated to helping those affected by blindness caused by rare inherited retinal disease, Hope in Focus...
Natural History Studies Vital to Finding Treatments for Rare Diseases
The lack of information on rare diseases can create difficulty in developing drugs to treat them. To help, it is important to...
In LCA: Naming Versus Numbering
Gene mutations in the rare inherited retinal disease of Leber congenital amaurosis (LCA) commonly are referred to by their gene name, such...
‘We know how important it is to know your gene. We’ve lived it.’
It took more than seven years to get a genetic diagnosis for our daughter. During that time, doctors were pretty...
First, Diagnosis. Then, Genetic Testing. It’s Important.
My Retina Tracker® is a free and secure online registry launched by the Foundation Fighting Blindness that helps connect families dealing...
To Test or Not To Test: 5 Reasons We Think You Can And Should Get a Genetic Diagnosis For Your IRD
Hey LCA or IRD family, does any of this sound familiar? You or your child has received a clinical diagnosis...