OIFE Investigator Meeting 2023 – Registration & Abstract Submission open OIFE together with our Medical Advisory Board, would like to invite you to register for the second virtual European Investigator Meeting for osteogenesis imperfecta (OI). The event will take place on November 17th 2023. TARGET GROUP -Primarily researchers and clinicians working with OI…
We invite you to register for a 1,5 hour webinar called “Clinical Trial Update 2023”. The goal of the webinar is to update the OI-community about ongoing clinical trials – both those who are recruiting and others. This includes the following trials: – The Cosmic and the Orbit trials (setrusumab) – The BoostB4 trial (stem…
The Balancing Act: Navigating Pain and Life with OI in Stockholm 34 percent of all individuals with OI report that pain has influenced their career choices, and 30 percent also state that pain affects their social life. This is just one of the many facts we learned during the OIFE’s Balancing Life With OI conference…
On June 10th and 11th 2023, we came together for OIFE’s Annual General Meeting (AGM). This time we met, in real life, in Stockholm, Sweden. There were approximately 40 people representing 15 ordinary (European) and 4 associate member organizations (incl. USA, Peru, Ahuce Foundation and Care4BrittleBones). On Saturday afternoon we took care of the formal…
In April 2023, for the second time, the Nordic Rare Disease Summit brought together decision makers, healthcare professionals, patient organizations, media, academia and life science companies to elevate rare diseases as a priority area in the Nordic countries. The Summit is a platform for policy discussions and the exchange of good ideas. OIFE’s president Ingunn…
The OIFE Youth Event is an informal meeting for people with osteogenesis imperfecta. The 2023 edition will be hosted by the Italian OI organization Associazione Italiana Osteogenesi Imperfetta on 7th-10th September 2023. Location: Villaggio al mare Marzotto, 44 Viale Oriente, 30016 Lido di Jesolo, Venice, Italy What can I expect at the OIFE Youth Event?…
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…
