The second part of OIFE’s annual meeting on June 4th 2022 was an educational webinar open to anyone. And a diverse group of ca 80 participants including OIFE-people, clinicians, researchers, industry people and other interested individuals came together to hear about news from the international OI-community.

News from OIFE, ERN BOND & others

The first part of the webinar included news from OIFE’s projects and activities and was presented by OIFE president Ingunn. The 2nd session included educational talks from ERN BOND coordinator Luca Sangiorgi about how patients and doctors can access expert advice from the European reference network. It also included a talk from Dutch OI-researcher Marelise Eekhoff on what a clinical trial is, why people with OI should consider taking part and what they should consider before doing so.

News from research & development

Marelise’s talk was a good introduction to the following sessions, which included updates from research & development. Ingunn talked about the value of patient experience data (PED) and real world data (RWD), which is the background for our biggest project in 2021 – the IMPACT survey. Arun Mistry gave updates on the results that are gradually coming out of the IMPACT survey, which include both posters and talks at various conferences as well as four scientific articles.

OIFE has also created their own abstract about how the organizations worked together to recruit more than 2200 responses for the IMPACT survey. This abstract has been accepted as a poster at both the ECRD-conference, the ICCBH-conference and OI2022 in Sheffield.

The last part of the research session was updates from various clinical trials, including:

• The setrusumab project (Mereo & Ultragenyx)
• The romosozumab project (UCB & AMGEN)
• The BoostB4 trial (Boost Pharma)
• The Topaz-trial

What does the delegates want?

The 2^nd part of OIFE AGM part 2 was an interactive discussion with the delegates & community members about what kind of events and topics they want to see more of in the future. The delegates provided feedback that they wanted a mix of topics including organizational development and news from OIFE projects and research. Our associate members from Chile and Peru also stressed the importance of continuing with online events, because it has great value for those who cannot travel to Europe for meetings.

Written by Ingunn Westerheim, OIFE