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…
By Ingunn Westerheim, OIFE President It’s been some months since we came home from Hong Kong, but the memories are still fresh in our minds. The reason for the amazing trip was to take part in the 15th scientific conference on OI organized by Dr. Michael To. And we were three people from the OIFE Board…
Written by Ingunn Westerheim, OIFE president Stephanie Claeys and I had the great pleasure of traveling to Dundee, Scotland, to attend the conference organized by the Brittle Bone Society. You can see the entire programme here. It started with a scientific symposium – with talks about new developments in research and clinical care. Topics covered…
In February I turned fifty. 50 years! When I see the number, I still cannot really grasp it. When I was younger, I felt fifty sounded really really old. And maybe it is? After all – I have probably lived more than half of my life. Have I accomplished everything I want? Do I still…
Written by Silvia Falcier, OIFE Youth coordinator Whoever is reading this article is probably holding their phone with fingers that curl in unusual ways as they stretch upward – or maybe the reader knows someone with this unique characteristic. One thing is certain: if we are here to read about Osteogenesis Imperfecta, we are also…
OI impacts much more in our lives than just the direct health related aspects. OI can cause temporary or permanent mobility issues. These disabilities can create other challenges like inaccessibility, lack of independent living support, economic and social problems as well as discrimination and ableism. OIFE’s volunteers are therefore also engaged in advocacy on other…
OIFE’s Stronger Together-project is ongoing and will have an important milestone at our capacity building conference in Valencia in September. The conference is for board members, staff and volunteers from our national OI-organizations. The goal is to make our member organizations better equipped to meet the complex reality that we’re living in – and give…
By Alessandra Tolaccia, OIFE Volunteer I have been suffering from chronic pain for over 15 years now, and every time I have approached a new doctor looking for help, the answer has always been the same: pain in muscles/tendons has nothing to do with OI. But why doesn’t my pain go away with the common treatments…
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…
