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: https://youtu.be/UyeNZPRn0dw?feature=shared 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…
By Ingunn Westerheim, OIFE President Yesterday we received the first version of the new video about OIFE from “Balancing Life with OI”. We cannot wait to share it with the rest of you. One of the questions that was asked in the video was “What does OIFE mean to you?”. This can be a tricky…
OIFE Investigator Meeting 2023 – Registration & Abstract Submission open OIFE together with our Medical Advisory Board, would like to invite you to register for the second virtual European Investigator Meeting for osteogenesis imperfecta (OI). The event will take place on November 17th 2023. TARGET GROUP -Primarily researchers and clinicians working with OI…
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…
Interview with Nick Bishop, professor of paediatric bone diseases at the University of Sheffield, UK Who are you and what is your relationship to OI? My name is Nick Bishop and I am professor of paediatric bone diseases at the University of Sheffield in the UK. I’ve worked here for the last 25 years (nearly).…
“Disability Burn-Out”: Internalized Ableism and its consequences! By Raul Krauthausen, disability activist with OI A disability can be stressful and sometimes trigger burnout. Often, one’s own internalized ableism plays a major role – in other words, the pressure of having to gain a raison d’être through performance and functionality. This can rule a lifetime. It…
Interview with Téa La, Community Development Officer for CLAN (Caring & Living As Neighbours) At OIFE’s Annual General Assembly on June 10th, we were happy to announce that the OIFE Board has accepted the membership application from the NGO CLAN (Caring & Living as Neighbours), to become a supporting member of OIFE. CLAN is an…
Interview with Jay Manuel, Music Producer and Content creator, Georgia, USA Meet Jay “Mini Producer” Manuel, a music producer and content creator based in Georgia, USA. Despite being hard of hearing and living with Osteogenesis Imperfecta Type 3 and Autism, Jay has dedicated his career to breaking barriers and representing young professionals with disabilities in…
My name is Isis Atuncar, I am from Peru, and I was diagnosed with OI when I was born in 1986. I had the opportunity to receive medication and surgical treatment in the USA. That treatment improved my quality of life. When we were back in Peru, my parents and other families together formed the…
