OIFE in Dundee
After some various travel hickups we arrived Dundee for the Brittle Bone Society (BBS) Conference 2025 on July 23. It was three days of fun and educational events including news from research, advocacy and stories of lived life with OI.
The series of events started with a scientific symposium featuring an international line-up of world-leading experts in diagnosing, treating and caring for people with OI. It included talks about new developments in research and clinical care. Topics covered were new and potential therapeutic approaches, pain, non-union fractures, muscles and tendons, neurological issues in OI and much more. Participants were mostly OI professionals – but also some patient representatives from the BBS and from OIFE.
July 25 brought another conference day focused on research, but now with a more mixed
audience – where the majority were people with OI themselves. We got to hear about developments in research and development of potential OI therapies. Talks also covered why the voice of people with OI is important in research and advocacy, and how each and every one of us can contribute on different levels. We got to hear testimonies from adults with OI – and how their experiences had been shaped depending on whether their OI was visible or not.
Ingunn was together with Tracy Hart (OIF), invited to give a talk about the IMPACT survey and what we have learned so far.
The talk was placed in the session called Market Access. And one of the ways we can use the patient experience data (PED) from the IMPACT survey, is to inform the health technology assessment (HTA) bodies in different countries about the unmet needs of OI. We can also use the data in discussions with payers such as national welfare authorities and public and private insurance. Hopefully this will help us access to the many potential therapies for OI that are being investigated at the moment.
Friday evening it was time for socializing with the gala dinner, award show and a world premier of a new puppet theatre about OI.
Saturday included the BBS AGM and talks about living with OI from different perspectives.
This year’s BBS Conference was also the finishing line for the celebrated “Medics on the March” – with doctors from UK and USA raising funds for OI.
