In 2020, the founding fathers and mothers of three OI societies sadly passed away. One of them was the first person worldwide to initiate a patient organization for OI. Many were following her example, and some years later, the idea of founding a European umbrella organization was born. Former OIFE president Ute Wallentin, has written…
In Denmark some younger people with OI were prioritized to receive the COVID-19 vaccine. Read about the experiences from Jacob below. Text written by Jacob Ø. Wittorff, member of DFOI All it took was a quick jab, and then it was over. I got my COVID-19 vaccine on a cold but sunny afternoon in January.…
Our Polish delegate Aneta is planning to write an eBook about good examples from people with OI living in Europe who are physically active in different ways. Aneta herself has OI type IV and has tried many different sports and activities: swimming, scuba diving, crossfit and climbing. The project has the working title “Athletes without…
Through social media we learned that Jeanette Chedda is running for Parliament in the Netherlands. Her main cause is disability politics and fighting for diversity. The elections are coming up in just a few days. Can you tell us a little bit about yourself? I am Jeanette Chedda (37), I have OI type three. I…
The winner takes it all! What a coincidence! Some time ago OIFE had prepared an interview with Pablo Ostarek, an artist with OI, which you can read below. And this week, we congratulate him for winning the 1st prize in the International Rare Disease Film Festival for his short film “This is not a person”!…
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 Jenni-Juulia Wallinheimo-Heimonen Who are you and what do you do and in what way has OI affected your art? I’m a multidisciplinary artist and an activist making political disability arts. My passions are structural violence, aesthetics of assistive devices and issues related to women with disabilities. My background is in textile arts but…
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…
Interview with Nicklas Luginsland – Esoccer player with OI Can you tell a little about yourself? My name ist Niklas Luginsland, 24 years old. Currently I live at home in Germany with my parents and my brother. One year ago I finished my Bachelor in Public Management. During my studies I lived together with 3…
