OIFE’s AGM & 2025 Conference in Oslo: Unpredictable weather, false alarms and the missing pieces in the OI-puzzle

The 2025 OIFE AGM and conference in Oslo focused on team building, mental health, youth engagement and knowledge gaps in OI-research.

People with OI are used to preparing for the unpredictable, and there’s hardly anything more unpredictable than the weather in Scandinavia.

Maybe that’s why we were quick to activate our plan B when OIFE held its AGM and subsequent conference in Oslo, and the rainy Nordic weather ruined our plans for outdoor team-building on Friday.

We’ll return to that later. But first, let’s focus on the conference itself.

It took place at the Quality Hotel Expo in Fornebu, just outside Oslo, with check-in on Thursday evening. Here, OIFE launched a new ambassador programme. A group of volunteers who helped with check-in and were available throughout the conference to assist participants with practical questions. It’s a concept we also expect to use for our major Topical Meeting in Copenhagen in June 2026.

The new board

The first item on the programme in Oslo was Friday morning’s AGM, where we elected a new board. We said goodbye to our treasurer Coreen Kelday and Anna Rossi, and welcomed Alessandra Tolaccia and Natalia Verduszco. Alessandra Tolaccia will serve as our new Vice President, while our former Vice President, Bruno Van Dijck, steps into the role of Treasurer.

OIFE’s first Team Building Event

After the AGM, the programme continued with the planned team-building session. And why team-building, you might ask?

Following our Stronger Together conference in Valencia last year, one of the recurring pieces of feedback was that participants wanted more time and opportunities to connect and build relationships across national organisations. And such relationships and knowledge-sharing are essential for building strong national organisations.

As mentioned, the weather forced us to move the team-building indoors. Working with a local company, participants were divided into teams to tackle a series of fun challenges ranging from solving riddles to answering trivia questions.

Knowledge gaps in OI

Saturday’s programme began at 9:30 with a conversation between Lars Folkestad, chief physician and PhD at Odense University Hospital in Denmark, and Lene Lande Wekre, MD from the Skeletal Dysplasia team at the TRS National Resource Centre for Rare Disorders in Norway.

Lars Folkestad described OI research as “small bricks in a very large puzzle,” with many pieces still missing.

They highlighted several under-researched areas, such as women’s and men’s health, reproductive health, and mental health, and also stressed the importance of studying the natural history of OI patients. That refers to research on how the condition develops over the course of a lifetime.
This type of data can help identify patterns in how OI progresses and can provide important answers to the many questions parents ask themselves and their doctors when their child is diagnosed.

They also discussed the pitfalls of relying too narrowly on hospital data for instance, by underestimating the number of fractures people experience, simply because many with OI learn to manage fractures on their own without seeking medical help.

How to influence drug development

Next on the agenda was a panel of representatives from pharmaceutical companies developing treatments for people with OI.

When we’re prescribed a new medicine by our doctor, it comes at the end of a long and complex development and approval process – a process that patients can play a role in influencing.

The panel featured representatives from Mereo Biopharma, Boost Pharma, UCB, and Angitia Bio, and was moderated by Lidiia Zhytnik. Together, they walked us through the drug development process and discussed how patient organisations can meaningfully contribute.

After lunch, Matt Johnson, Mental Health Advisor at EURORDIS, gave a talk on quality of life and the link between physical and mental health.

He described the many risk factors that people with rare conditions often face. Including stigma, trauma, hospital stays, financial insecurity, and social isolation, but he also emphasised the positive impact of inclusive communities where people have access to support and reliable information.

Younger and Stronger

Last year in Valencia, our theme was Stronger Together, with a focus on how national organisations could grow stronger and better include younger members.

That focus continued in the final two panel discussions on Saturday.

In the first, representatives from various national organisations took the stage to share some of their positive initiatives.

The panel included Andreas Kiel from Germany, Roeline Labout from the Netherlands, Stephanie Clayes from Belgium, and Elle-Riikka Isometsä from Finland.

Leonardo Panzeri from Italy was unable to attend in person but contributed a video presentation on the Italian association’s initiative “Play Together.” It focuses on helping children with OI push their comfort zones and overcome fear by engaging in activities in a safe environment.

Andrea Kiel presented a new online portal developed in Germany, while Stephanie Clayes, who serves on both the OIFE board and the Belgian national board, described how they’ve introduced members to the scientific side of OI through a visit to a research centre, where they, among other things, saw the zebrafish used in OI research.

Stephanie Clayes also moderated the final panel discussion, where younger members talked about how to improve youth inclusion.

A quick poll showed that many organisations don’t have board members under 30, and many attendees expressed concern about the lack of youth involvement.

The panel pointed out that organisations could do more to address issues that matter to younger members – such as dating, and that a good way to involve youth is by giving them specific tasks, responsibilities, and titles.

False alarms

Saturday concluded with a dinner in the evening which was unexpectedly interrupted when a rogue fire alarm suddenly went off in the middle of dessert, forcing all hotel guests outside into the beautiful but chilly Oslo night to wait for the local fire department to arrive and give the all-clear. The wisest among us managed to grab a glass of wine before leaving the restaurant.

HTA made fun and workshop about unmet needs

But that wasn’t the end of the weekend. The programme continued on Sunday morning, where we wrapped things up with a workshop on how personal experiences with OI can document our unmet needs and ensure that research and priorities in repurposing projects like Remedi4All are shaped about what matters to the OI community. 

The workshop was led by Dalma Hozzzú and Reka Pozsar from the Syreon Research Institute, who with the support from Matt Bolz-Johnson, both managed to explain the complex topic of health technology assessment (HTA) in a fun way which was easy to understand.  

The outcomes from the workshop will also be valuable in several of the projects we are involved in at the moment.

What did you learn from the teambuilding?

Roeline Labout, Netherlands

What did you like best about the team-building event?
It was such a fun activity, and we had a great time together on my team. There was a lot of variety in the questions. Sometimes you had to complete a task, and other times you had to go hunting for codes.

What did you learn?
I learned to be flexible, and I also picked up some amazing facts from the questions. And everyone was really enthusiastic.

Did you get to know any new people today?
Yes. In my group, I only knew one person beforehand. Because it was a game, you become quite informal with each other since you have to complete a lot of tasks quickly. I think that when you meet someone in a normal setting, you tend to stay formal. So when I meet the people from my group again later today, it will be much easier to start a conversation.

Rune Bang Mogensen, Denmark
What did you enjoy most about today?
The best part was doing something active together — something different from just sitting in a meeting room. It was so much fun.

Did you get to know any new people?
Yes, I did. So the mission was accomplished. It was really great.

But Rune, you didn’t win today. How do you feel about that?
Haha, that part was awful. I’ve always believed that people who say sport is about participating and not winning are lying.