As the co-chair of the steering committee, Ingunn Westerheim encourage you to join the growing EuRREB (European Registries for Rare Endocrine and Bone Conditions) network and contribute to advancing knowledge and care for patients with rare endocrine and bone conditions. By becoming a participating centre, you can contribute valuable clinical data, collaborate with an international…
On September 12, 2025 OIFE has been represented by Alessandra Tolaccia at the symposium organized by the European Registries for Rare Endocrine and Bone Conditions. Good opportunities to learn what is going on in the world of registries and to network with leading OI- and rare bone experts.
We were two people (Alessandra and Ingunn) who represented OIFE at the 2nd Registries Symposium of the two registries EuRR-Bone (rare bone conditions) and EuRRECa (endocrine conditions) on April 22nd 2024. The Symposium in Milan was attended by 90 people (60 in person and 30 online) from 22 different countries and made the event a resounding success! We got…
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…
In OIFE Magazine 2-2021 we published an interview with Brendan Lee, M.D. Ph.D., Baylor College of Medicine, Houston, Texas about OI-registries in the USA. In Europe we are developing the EuRR-Bone – which OI-registries do you have in the US? There is a contact registry with ca 2500 individuals signed up, which is sponsored by the…
We know you hate surveys. We truly do. Every time you buy an object, order take away, online grocery or come home from a holiday, you get a survey. Are you happy? Unhappy? Do you have something to complain about? Would you like to recommend our app? Do a review? Please, please, please provide us…
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…
Friday the 19th the Medical Advisory Board (MAB) of OIFE came together for their 2nd meeting in 2020. The topics included Key4OI and the new rare bone registry EuRR-Bone. In addition to the OIFE MAB, we had invited the OIFE EC, our resource group on registries and Tracy Hart from the OI Foundation. In total…
OIFE’s honorary member Taco van Welzenis recently attended the International Summer School on Rare Disease Registries and FAIRification of Data in Rome, Italy from Sep. 23rd – 27th 2019. It was a part of a series of training activities proposed by the European Joint Programme on Rare Diseases (EJP RD). You can download the agenda…
