From May 28-29 the the different clinicians and patient representatives from European Reference Network on Rare Bone Diseases (ERN BOND) were meeting in Oslo at their annual meeting. OIFE was represented by Rebecca T. Skarberg (ERN BOND epag) on site and Ingunn Westerheim, who took part online. Topics covered were joint replacement in OI and…
On September 11, OIFE was represented at the annual meeting of the European Reference Network on Rare Bone Diseases (ERN BOND) by our vice president Alessandra Tolaccia. Looking forwards to hear about ongoing activities and projects. The full programme can be downloaded here.
Interview with Tenna Toft Sylfest, XLH Alliance OIFE has for many years had a project called “A stronger BOND between us”. The goal behind the project is to further develop an informal network between different stakeholders working on OI and other rare bone conditions (RBDs). The project has several subprojects and activities. We are formal…
OIFE is lucky to have two patient representatives (ePags) in ERN BOND – European Reference Network on Rare Bone Diseases. This week they have had an important meeting in Norway, to talk about how to improve care and services for people with rare bone conditions in Europe. Not sure what ERN is and does? We…
Would you be interested in attending a conference about patient engagement in OI research in Bologna, Italy? The conference takes place on June 13th 2024. It is organized by the consortium Remedi4All in collaboration with OIFE, As.It.OI (Italian OI-association), ERN BOND (European Reference Network on Rare Bone Diseases) and EURORDIS (Rare Diseases Europe). Tickets are…
On the 17th of November 2023, OIFE hosted the second Virtual OIFE Investigator Meeting for the OI research community. 273 people from 48 countries signed up and more than 160 individuals attended the online event. Attendees were a mix of health professionals, scientists, OI clinicians and a lower number of representatives from industry and patient…
The call from the European Reference Network on Rare Bone Diseases (ERN BOND) for building a working group around the use of High Resolution peripheral Quantitative Computed Tomography (HR-pQCT) in OI is still open, closing June 20th 2023. What is HR-pQCT? HR-pQCT can quantify bone microstructure in-vivo at a very low radiation dose, and could…
The OIFE was well represented at the spring meeting of the European Reference Network for Rare Bone Diseases (ERN BOND) in Bologna the first week of May. ERN BOND brings together 53 health care providers (hospitals) that deal with rare bone conditions. 40 people attended face to face and 13 online. In addition to several…
The hybrid workshop “Patient priorities in ERN BOND beyond Quality of Life” is organised by ERN BOND – European Reference Network on Rare Bone Diseases and their patient representatives (ePAGs). It will take place on Saturday 6th of May from 9 – 4PM CET. This workshop aims to explore four priorities identified for patients with…
