LIEKE’S STORY

My daughter, now 8 years old, was born with bladder exstrophy. That means her bladder was outside her belly, and that her pelvic bones were open. Her reconstruction surgery took place two weeks after her birth.

Through the rare disease of my daughter, I was inspired to make a difference in the community and stand up not only for my daughter, but for everyone with bladder exstrophy.

Through ERN eUROGEN, there is greater knowledge sharing with specialists. I have met other patient organizations/representatives, and together we can make a difference to improve future treatments.