Our Annual General Meeting (AGM) 2021 will take place via Zoom on June 19th. OIFE AGM part 1 (the formal business part) – from 11.00 – 13.00 OIFE AGM part 2 – OIFE projects and collaborations from ca 13.30 – 16.00 CET which will include: – Prelaunch of the IMPACT survey – News from research…
The e-REC is an electronic reporting system which captures activity and allows for a better understanding of the occurrence of rare bone conditions incl. OI. The platform is open to ALL centers who see people with OI and other rare bone conditions. WHAT IS EURR-BONE? The EuRR-Bone (European Registry for Rare Bone and Mineral Conditions)…
IntOI 2020+1: Virtual International OI Meeting Early-Stage Investigator Symposium September 9, 2021 | 11:00am – 4:00pm EDT (GMT-04:00) Chaired by Dr. Joan Marini of the National Institutes of Health, this is an interim International OI meeting pending the return of in-person meetings, with the postponement of the International OI meeting to 2022. The presentation focus…
Often siblings of children with a chronic illness are called “shadow children” because they live in the blind spot of their parents. They are often alone with their grief and put their own needs aside for their siblings’ needs. My name is Kristine Holm Laursen, but just call me Krisser. I am now 26 years…
The OIFE and the Brittle Bone Society are delighted to host the 2021 Youth Event (digital version). The theme is “Around the World!” From South America to Australasia. Along with a small team of travel mates, you will face challenges in each country, earning Travel Credits to purchase your onward journeys. Which team will cover…
A new quality registry for rare bone conditions is being developed in Norway. It’s a collaboration between Oslo University Hospital (orthopedic dept.) and the Norwegian centre of expertise for bone conditions TRS kompetansesenter for sjeldne diagnoser. On May 7th an advisory board was established and Ingunn Westerheim & Rebecca Tvedt Skarberg (substitute) from OIFE were…
Come join us on June 8th for a webinar with an update about the TOPAZ trial and OI-research. The event is hosted by the university of Edinburgh and OIFE is one of the contributors together with the Brittle Bone Society. Register for free here Read more about the TOPAZ trial in the OIFE Magazine
Who is behind the survey? OIFE and the OIF are assisting with the distribution of a survey developed by a project team supported by Care4BrittleBones. The team consist of professionals interested in increasing the knowledge about the physical well-being of individuals with Osteogenesis Imperfecta (OI). Project team Kathleen Montpetit, Occupational Therapist (retired), MSc OT, Montreal,…
Come party with us! Come party with us to celebrate that another Wishbone Day has created awareness about OI around the globe. Friday May 7th in the evening (European time) you’re all invited to a special #wishboneday and #OIstrong celebration on zoom! The informal party will include OI-trivia, games, awards, and music. What kind of Awards will there be? We…
