OIFE Investigator Meeting – a success

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…


OIFE Investigator Meeting 2023

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…

oife flyer update clinical trial)EVENTS

OIFE Webinar: Update on Clinical Trials 2023

We invite you to register for a 1,5 hour webinar called “Clinical Trial Update 2023”. GOAL & TARGET GROUP The goal of the webinar is to update the OI-community about ongoing clinical trials – both those who are recruiting and others. The target group is anyone interested in OI-related research – both professionals and people…

Photo of the group OIFE at Stockholm AGMEVENTS

OIFE AGM 2023 in Stockholm

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…

Ingunn giving speechADVOCACY

OIFE at Nordic Rare Disease Summit

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…

Photo of Viaggio al Mare MarzottoEVENTS

OIFE 2023 Youth Event

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?…

call for abstractsCONFERENCES

Abstract Deadline March 6

On 9-10 June we will be organising a conference called "Balancing Life in OI" in Stockholm, on pain and its impact in OI and other rare bone conditions. We invite abstracts and case studies on any aspect of pain in OI and rare bone conditions including: 1. Pathophysiology and mechanisms of pain 2. Causes, assessment…
eurrbone logoADVOCACY

EURR-BONE Final Meeting

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…

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