Meet Our Patient Representatives: Ivana Marinac

During Cleft and craniofacial awareness and prevention month, we are introducing the patient representatives. Today, meet Ivana Marinac

Ivana is a patient representative within ERN CRANIO, representing the organization Rare Diseases Croatia.

Why Patient Representation Matters to Me

For me, being a patient representative means making sure that what is not seen in a photograph is still heard at the table.

In ERN CRANIO, patient voice means reminding us that care should not be shaped only around a diagnosis, but around the life lived with it.

Behind every clinical finding, photograph, operation or protocol, there is a whole person. And good care begins when we understand what is not immediately visible.

Because nothing matters more than understanding.

From an ethical and personal perspective, I feel that my main contribution is to offer advice, experience, and perspective, in the hope that it might help someone, even if only as a small guiding thread through what can sometimes feel like a path through Mordor. And perhaps, through that process, we also grow and improve as people ourselves.

What isn’t seen in a photograph of a smile?

In the photograph, you see the smile.

You don’t see the bottle-feeding that didn’t work. You don’t see the speech that was built over years. You don’t see the teeth waiting their turn. You don’t see the parents’ questions at 2 a.m. You can not discern the hearing that needs to be understood. You don’t see the child learning that they are not “before and after”, but a whole person.

July is Cleft Awareness Month.

The smile is what the photograph shows.

Awareness is everything else.