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…
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…
The IMPACT Survey – how we identified knowledge gaps and created a meaningful survey for the OI-community The IMPACT Survey was an international research project exploring the real impact OI has on people’s lives. The survey was run by Sam and Maria from the Wickenstones Company – an experienced scientific agency who, OIFE, OIF…
How clinical work, registries, research, guidelines and quality improvement are connected Interview with Lena Lande Wekre, M.D. in the Skeletal dysplasia team at TRS National Resource Centre for Rare Disorders, Norway Who are you and where are you currently working? My name is Lena Lande Wekre and I am a Medical Doctor in the Skeletal…
We know you hate surveys. We truly do. Every time you buy an object, order take away, online grocery or come home from a holiday, you get a survey. Are you happy? Unhappy? Do you have something to complain about? Would you like to recommend our app? Do a review? Please, please, please provide us…
