MEMBERS

“Not just an OI community, a true OI Family”

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…

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MEMBERS

It seemed impossible at first, but we made it happen

Interview with Karina Prokopiuk, co-founder of the Ukrainian Association Crystal People. For Rare Disease Day campaign 2026, Karina agreed to share her experience with us, being the mother of a children with OI. Can you share your experience with balancing personal and professional life with a child with OI? Balancing motherhood and professional life with…

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