At the OIFE 2025 conference we had the pleasure of having Matt Bolz-Johnson from EURORDIS present as a speaker. And honestly we could not ask for a better contributor at our 2025 conference in Oslo! Matt Bolz-Johnson reminded us about the importance of including mental health in our advocacy for better care and services. He…
OIF Annual Scientific Meeting 2025 in Chicago “Translating discoveries into therapies” Written by Lidiia Zhytnik, OIFE Advisory Board Member The 25th annual OIF Investigator meeting took place 9-11 of April 2025. Traditionally held in Chicago, the OIF investigator meeting invites more than 100 top (almost exclusively) US and Canada scientists and clinicians working on improving…
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…
New PhD in OI: Experience of Chronic pain in adults with OI Interview with Rubén Muñoz Cortés My name is Rubén Muñoz Cortés and I work as a psychologist at Fundación AHUCE. I am specialized in clinical psychology, and my primary role involves offering psychological therapy to individuals with osteogenesis imperfecta (OI) or other dysplasias,…
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…
Most of the talks and presentations from OIFE’s topical meeting “Balancing life with OI” in Stockholm June 2023 are now available with English subtitles in OIFE’s Playlist on YouTube. You can have auto texting in other languages, by clicking on settings. The various talks cover the causes, assessment, and management of pain in OI and…
OIFE’s 5th Topical Meeting “Balancing Life with OI” took place in Stockholm, Sweden, in June 2023. The main topic of this international conference was pain in OI and its impact for instance on physical and mental health, sleep, fatigue, mobility, relationships/families and work/life balance. Here are some impressions from participants: Alessandra Tolaccia My name is…
The Balancing Act: Navigating Pain and Life with OI in Stockholm 34 percent of all individuals with OI report that pain has influenced their career choices, and 30 percent also state that pain affects their social life. This is just one of the many facts we learned during the OIFE’s Balancing Life With OI conference…
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…
