On February 13th we were four representatives from OIFE who attended the final meeting of the EuRR-Bone registry as a 3 year old project. Claudia Finis attended face to face and Taco van Welzenis, Rebecca Tvedt Skarberg and Ingunn Westerheim attended online. The project team in Leiden have delivered on all their milestones, and has…
On January 23rd the member organizations of OIFE were invited to the OIFE Leadership Meeting 2023. The purpose of the meeting was to inform the organizations about events and activities going on in the OIFE. The agenda included the following topics: News from OIFE incl. clinical trials Launch of OIF & OIFE pain survey EuRR-Bone…
The European Registry for Rare Bone and Mineral Conditions (EuRR-Bone) needs input from people with OI and other rare bone conditions to finalize their questionnaires directed towards patients. What are the most relevant aspects for people with OI? Which topics can be disregarded? There is also a separate survey asking for input from professionals who…
Dear members of the international OI-community! In Australia the champagne has been uncorked already, but in the rest of the world we are in different ways preparing the celebration of another year coming to an end. It is also a celebration of the opportunities of a New Year called 2022, which we hope will be…
Interview with Natasha Appelman-Dijkstra M.D. Ph.D., Leiden University Medical Center (LUMC), Netherlands Who are you and what is your relationship to OI? I am Natasha Appelman-Dijkstra internist-endocrinologist in Leiden University Medical Center and specialized in Bone and Mineral Disorders and thus treating patients with OI. I have worked in the Leiden University Medical Center (LUMC)…
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…
Our Annual General Meeting (AGM) 2021 took place on 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 included: – Prelaunch of the IMPACT survey – News from research (BOOSTB4, TOPAZ, SETRUSUMAB, EURR-BONE…
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)…
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…
