Researching woman looking through microscopeEVENTS

Registration and abstract submission open – OIFE Investigator Meeting

Registration and abstract submission is open now! The umbrella association Osteogenesis Imperfecta Federation Europe (OIFE), together with members from our Medical Advisory Board, invite you to register for the third virtual European Investigator Meeting for osteogenesis imperfecta (OI) on November 15th, 2024 (on Zoom). The event is free. Goals Highlight new OI research Facilitate collaboration…

READ MORE
ADVOCACY

OIFE at European Association Summit

In May 2024 OIFE president was represented at our first European Association Summit (EAS) in Brussels which offered an opportunity to learn from other associations, discuss what the future holds with upcoming EU elections and connect with others leaders and managers of different kinds of associations. The European Association Summit (EAS) is the annual event…

READ MORE
YOUTH

OIFE youth meeting 2024 – Extended deadline!

Join us for an unforgettable experience at the Youth Weekend in Eidene, Norway, from September 12th to 15th, 2024! Organized by OIFE and NFOI, this event is for youth with OI from every European country, aged 18 to 32. Spaces are limited, so be sure to secure your spot early! You can register here. Registration…

READ MORE
EDUCATIONAL

OIFE in EUPATI Patient Expert Training Programme

Alessandra Tolaccia is representing OIFE at the EUPATI Patient Expert Training Programme. The EUPATI Expert Training Course is a unique opportunity for patient advocates to receive expert-level training in medicines research and development, specifically tailored for them. The certificate course is a mixture of online and face-to-face education modules over a 13-month period. April was…

READ MORE
ADVOCACY

The IMPACT Survey has a new home!

Launched in time for Wishbone Day 2024, the new IMPACT Survey website helps to raise awareness of osteogenesis imperfecta by capturing the lived experience of the condition, as told by people with OI, their caregivers and close relatives. On the IMPACT Survey website, you will be able to find out more about this landmark survey and…

READ MORE
RESEARCH

New article with OIFE co-authors published

We are happy to announce that another scientific article where patient representatives from OIFE have contributed, has been published on May 3rd, 2024. This paper describes an innovative initiative that is called Project SATURN: Systematic Accumulation of Treatment practices and Utilization, Real world evidence, and Natural history data for the rare disease Osteogenesis Imperfecta. Hopefully…

READ MORE
EVENTS

Join us on May 6th for Wishbone Day!

This year, we’re launching #Together4OI as a hashtag to celebrate Wishbone Day – the international awareness day for OI. Read more about how it all started here. With #Together4OI we are shining a light on the incredible work that the OI-organizations are doing on national level and what value they bring to people with OI.…

READ MORE
RESEARCH

COSMIC and ORBIT: All patients enrolled

We are happy that a potential new treatment for OI is getting closer. Many of you have heard about the Cosmic and Orbit trials and today April 30th 2024, it’s official – all patients needed have now been enrolled. “We would like to thank the OI community for its support, trust and participation as we complete…

READ MORE
Translate »