Interview with Agnieszka Czoch-Tokarczyk from the Polish organization. She agreed to share the story of her family with a child with OI for Rare Disease Day Campaign 2026.

After getting to know the OI community, what has surprised you the most and what has helped you as a parent?

“I first met the OI community when my son Konrad was not yet a year old, 17 years ago.

Very quickly, however, I realized that this was not just an OI community — it was a true OI Family.

People with osteogenesis imperfecta are incredibly positive, warm, and able to embrace life to the fullest. That meeting was a turning point for me and for my family. For the first time, I began to look at the future differently. I understood that people with OI are incredibly strong on the inside. Today, I am certain that Konrad will manage in life and will be happy.

Since 2009, every summer we have attended our “family” gatherings — rehabilitation camps. We go there not only to exercise under the supervision of specialists, but above all to spend time together. It is a time for conversations, support, sharing experiences, and building relationships that last for years.

What does the Polish summer camps mean for you?

These meetings are much more than rehabilitation for us — they are a sense of community, understanding, and strength that comes from being together.”