By Wang Yiou, Founder of China Dolls For nearly two decades, I have had the privilege of working with thousands of people living with OI in China. And as the founder of the China-Dolls Center for Rare Disorders, I have learned that statistics alone never tell the full story. Every percentage represents a child with OI…
Editorial written by Jacob Wittorff, OIFE Board Member For years, I just took the world as it was. When faced with a flight of stairs or other obstacles, I simply shrugged and turned around. But at some point, I realized it doesn’t have to be this way. The world can look different. One of the…
Umi, who is originally from Japan, moved to New Zealand after the nuclear disaster in Fukushima back in 2011. Today, she is living in an accessible house on South Island together with three friends. Umi talks about her life and what it means to live in New Zealand as an immigrant with a disability. My…
Ingunn Westerheim and Rebecca Tvedt Skarberg from Norway are the recipients of this year’s Black Pearl Volunteer Awards, an international award that recognizes their volunteer efforts for people with the rare condition osteogenesis imperfecta (OI). How it all started We do the interview on Zoom, since both ladies are at risk for Covid19. But what…
Interview with Anni Kyröläinen, Finland Who are you and what is your relationship to OI? I am Anni Kyröläinen. I am 31 years old and I come from Finland. I was born in Eastern Finland and after high school I moved to Helsinki from my little little hometown. I studied political science in the university…
