The year 2024 is history – and it will be a year to remember with pride for the OIFE. Thanks to a growing number of dedicated volunteers, we were represented in many different conferences and events during the year – both face to face and online. We co-hosted the big Remedi4All conference in Bologna in June, but we also hosted many successful events of our own. These included online versions of OIFE Leadership Meeting and our General Assembly. In September we came together in Valencia for Stronger Together – OIFE’s first capacity building event for our member organizations. A few weeks later, the younger generation gathered in Norway for a youth event in stunning surroundings. October and November brought two successful online events – the Clinical Trial update and the OIFE Investigator Meeting. Both with a record number of participants, showing the growing outreach of OIFE. In addition to this we created awareness about our cause through two successful social media campaigns.

OIFE LEADERSHIP MEETING

Our annual Leadership meeting for our member organizations took place on February 27th on Zoom. 23 organizations were represented from 21 different countries around the world. In total we were 48 people attending. The meeting covered news from OIFE, including how and why we work with industry, clinical trials, our Stronger Together project. It also provided some tips on how our organizations can take advantage of awareness days like Rare Disease Day and different good examples. Different examples from some of our member organizations were presented.

WISHBONE DAY 2024

Once again, the international community came together on May 6th to celebrate the international awareness day for osteogenesis imperfecta (OI) – also known as Wishbone Day. In advance – OIFE had celebrated the importance of the OI-organizations through the social media campaign #Together4OI.

EDUCATING PATIENT EXPERTS

Educating patient experts was important for OIFE in 2024 and our members had 4 participants at Open Academy Medicines Research and Development School and Scientific Innovation & Translational Research School, which is organized by EURORDIS. The course took place in Barcelona and the two courses ran in parallel from Monday to Wednesday (June 3-7, 2024). Then the groups came together for two days of joint sessions to finish the week.

OIFE GENERAL ASSEMBLY 2024

OIFE’s general assembly took place on Zoom on June 11 and gathered 35 participants from 19 different organizations in 17 different countries. The voting members of OIFE unanimously approved the work of OIFE Board in 2023 and positive feedback was received.

REMEDI4ALL MEETING IN BOLOGNA

The 2nd Remedi4All multi-stakeholder meeting “Ensuring patient centricity in Osteogenesis imperfecta research” took place in Bologna on 13th June 2024. In addition to co-hosting the event, the OIFE and the international OI community were there giving examples and highlighting the importance of patient engagement and patient centricity in OI research, design and follow up of clinical trials, treatments and holistic care.

WE FEEL SUPPORTED! STRONGER TOGETHER IN VALENCIA

Our Stronger Together capacity building conference for our national organizations took place from September 5-8 in Valencia, Spain. The goal of the invite only event, was to strengthen the organizations’ ability to advocate on a national level. We gathered almost 70 people, who were mostly board members and volunteers from our European members. The programme included different topics from patient involvement in research and development and regulatory affairs as well as organizational issues like communication and fundraising. Our organizations gave us very positive feedback, and many told us they felt both informed, motivated and supported after the event.

OIFE YOUTH EVENT IN NORWAY

The Norwegian OI-organization NFOI organized a successful OIFE Youth Event in Eidene, Norway from 12 – 15th of September. A total of 28 participants from 7 different countries, in the age group of 18-32 years old took part.

OIFE CLINICAL TRIAL UPDATE

An amazing number of 278 people from 55 countries signed up for the OIFE Clinical Trial Update which took place October 22nd, 2024, showing that OIFE’s outreach is growing year by year.  In the end we were around 130 participants who received lots of information and updates from 7 different trials and one related project.

RECORD NUMBER AT OIFE INVESTIGATOR MEETING

November 15th the 3rd edition of the OIFE Investigator Meeting took place. This time we had a record number of 325 people signing up from 56 countries. We had ca 210 participants signing in at the meeting itself. These were mostly OI researchers, which is the target group we wanted to reach. Lots of new and groundbreaking research were presented, followed by interactive discussions in the chat. New collaborations were established both during and after the event.

THE IMPACT SURVEY

Three articles from the IMPACT survey were published in 2024 – covering the overarching findings as well as the economic and the humanistic impact on adults with OI. The production of three more articles was started and these are planned to be published in 2025. In May the IMPACT survey website was launched, where you can find all the publications, presentations as well as social media resources.

THANK YOU!

On behalf of the OIFE Board I would like to send a big thank you to all the wonderful volunteers of OIFE. Without you – all these positive developments would not be possible.

Happy New Year & kind greetings from

Ingunn Westerheim
OIFE president