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…
By Ingunn Westerheim, OIFE President I am going to start this editorial with a quote from the Australian physiotherapist Verity Pacey. You can read an interview with Verity in this OIFE Magazine, which is a special edition about OIFE around the world. “Don’t wait for your healthcare team to ask you about pain and fatigue…
REGISTRATION IS OPEN – EARLY BIRD DEADLINE JANUARY 31 Lack of understanding and poor management of pain severely impacts the quality of life of children and adults with OI. Under the title “Balancing life with OI” we are organising a topical meeting on the neglected subject of the causes, assessment and management of pain in…
Background Pain is reported to be the main challenge for people with OI besides fractures. More than 60 percent of people with OI have chronic pain, and the percentage and complexity increase with age. In spite of this, there is very little information about how you can manage pain as a child or adult with…
On January 25th 2022 we organized the kick-off of the Pain & OI project, which is a collaboration between the OIFE and the Osteogenesis Imperfecta Foundation (USA) and a group of dedicated professionals who have experience on pain management, pain research and/or pain & OI. We had 21 participants from 10 different countries at the…
OIFE is interested in getting in touch with professionals (PTs, OTs, psychologists, medical doctors, researchers, pain specialists etc) who have experience/knowledge about pain & pain management in OI (or related bone diseases). We are considering a mini conference and/or project related to pain & OI and we are interested in getting in touch with people…
In place of the in-person OIF National Conference this year, the Osteogenesis Imperfecta Foundation in the USA will host a Virtual Conference on July 10-12, 2020. The Virtual OIF Conference will provide live online versions of some of the most popular informational and social sessions at the biennial OIF National Conference. People from all countries…
