We were three people from the Board (Bruno, Alessandra and Ingunn) who represented OIFE at the 15th International Scientific Conference on OI (ICOI). The high quality conference was organized by Dr. Michael To and his team from Hong Kong university and took place from October 29 – 31st.

DAY ONE

After the official opening on day one, Dr. Nick Bishop from the UK gave a talk called «OI in 2025…What Have We Learned Since 2022 Sheffield Meeting?». And this turns out to be quite a lot.

In addition to news from basic research, Dr. Oliver Semler from Germany, chaired a symposium about Patient-Centered Clinical Approaches in OI, where the IMPACT survey was mentioned several times. Other topics covered on day one, were the Key4OI registry, fracture data in OI from a big cohort in the USA and a dedicated session about research on OI type 5.

In the evening we enjoyed a Chinese tasting menu at the main conference dinner, where we got to learn new friends from both East and West.

DAY TWO

Day two of ICOI 2025 included three parallel sessions on basic research, orthopedic surgery and patient education. The orthopedic session included new topics like joint replacements, new surgical methods and a research project about leg length discrepancies and their consequences.

One interesting keynote talk was about pain mechanisms in EDS vs. OI followed by an interesting session on other issues than bone – including dental issues, how to motivate kids with OI to exercise, cardiopulmonary issues and the prevalence of autism in OI.

In the breaks we got to learn the representatives from the Asian OI-groups even better. We now understand more of each other’s projects and activities and how we can achieve closer collaboration in the future.

In the evening OIFE organized a very nice networking dinner with some of the collaborators OIFE is working more closely with.

DAY THREE

Day three started with various talks about different pharmaceutical trials that are ongoing in OI at the moment.
Then we went on to an industry sponsored session about unmet needs in OI and how we can meet those needs with further research and development.

We also got to learn about AI and research, where the researchers in Asia seem to have developed further.

Next was an important session called Life Journey from Pediatrics to Adults around the world, which covered different models of transition and what the unmet needs are in this area. Dr. To also got his long awaited Quality of Life award (2023) from the Care4BrittleBones.

In the breaks we got to meet some of the doctors from low income countries who were there thanks to a scholarship from Dr. To and the wide outreach of OIFE. This included researchers and clinicians from Egypt, Ethiopia, Vietnam and Palestine.

The final words of the conference were given to the patient groups. Three different perspectives were presented, coming from Care4Bones, The China Dolls (Illness Challenge Foundation) and the OIFE.

Ingunn stressed that we now need to move on from uncovering knowledge gaps, to filling them by developing better services and care for all age groups in OI. Issues like access to new and better treatments for fractures, pain and other symptoms were mentioned. We also need to adress age related problems in OI like cardiopulmonary, joint replacements, cancer and loss of independence. Which can hopefully be prevented by better care and mobility aids.

Ingunn also thanked Dr. To on behalf of all the patient groups present for making us feel so uniquely welcome. We felt that our voices was heard and hope this can be an example for future organizers of the conference.

See the whole programme here and download the programme book here.

Find reports about  the one day visit of OIFE in China and the East met West Meeting in Hong Kong here!