Why has the pediatric IRD population been left so far behind?

Um, Kerry, that is a really great question because most rare diseases present in children, 70% in fact, and yet 95% of all rare diseases have no treatment.

So, so there's a real imbalance in that, right? Um, if we look at where most capital investment goes, it goes to age-related diseases, diseases that present later in, uh, a person's life, and there's a few reasons for that.

Um, first, it's easier to find adults.

There's more of them.

Secondly, um, dis- adults perform better in visual acuity tests.

They can actually respond and tell you, "Oh, yeah, I can see that," or, "I can't see that." And, you know, kids, and even in some cases we're talking toddlers and, and babies, they can't give you that same feedback.

What actually happens to a family when they first find out that their, their child has one of these conditions?