By Ingunn Westerheim, OIFE President

It’s been some months since we came home from Hong Kong, but the memories are still fresh in our minds. The reason for the amazing trip was to take part in the 15th scientific conference on OI organized by Dr. Michael To. And we were three people from the OIFE Board attending – Bruno, Alessandra and myself together with 300 professionals, patient representatives, researchers and industry people from all around the globe.

And I repeat what I said in my conference talk – as representatives for the patient groups, we have never felt so welcome at a scientific conference before. We felt that our voices were heard and that the conference had a focus on the needs of people with OI. And this was first and foremost due Dr. Michael To and his fantastic team.

OIFE also regarded the conference in Hong Kong as a unique opportunity to connect with the OI organizations in the Asia Pacific space – both established organizations, but also new and emerging groups. We were therefore happy to be the hosts of a successful workshop for patient groups called “East meet West” the day before the scientific conference started. We hope to keep in touch with all our new friends from Japan, Korea, Taiwan, Vietnam and Hong Kong and build a lasting relationship eventually.

The IMPACT survey was mentioned a lot of times during the conference, because it has uncovered a lot of knowledge gaps, which has been documented in six published articles. But we’re not the only ones who are working on uncovering knowledge gaps in OI. Dr. Tosi has been working on this for years, Dr. Orwoll and his international group is doing it now and dr. Bishop had different initiatives in the UK.

In my conference talk, I was asked to provide a wish list from the patients for the next scientific conference, which will be in Italy in 2028. So, I did my best.

My primary wish is that we can look at the gaps we have discovered and focus on what we can do about them. Interventions! We have treated adults with different off label drugs for years, but we still don’t know what people are taking and if the treatment work or not. What kind of treatments should people have to relieve symptoms which goes far beyond fractures. Especially when we get older. And how do we make sure these treatments become accessible?

We need to think wider than bone density and fractures when it comes to treatment and care. How do we manage the pain and what is causing the pain? Should people have hearing surgery or hearing aids? Should we treat basilar invagination or wait, and see? Can we have dental implants? How do we treat heart issues in OI? And what do we do if a person with OI gets cancer? Chemo or radiation? Or will these treatments only do more harm? What do we do when a bone doesn’t heal or when you get arthritis and need hip surgery? Or shoulder replacement?

And perhaps most important of all – how do we prevent people from wearing out their bodies by giving them better and more adapted mobility aids? And energy saving strategies?

In short – we need to address what to do with the medical and social challenges that comes along with OI in all age groups. Both the challenges that comes because of OI and those that come due to normal ageing.

Because with OI, your treatment needs might be different from others when we get older. And we certainly don’t want to end up in geriatric care before we have to, because not a lot of positive things are happening there…

These are among the topics we will address at our Topical Meeting Phases of Adult Life with OI. The main topics are transition, fractures and surgery, women and men’s health and ageing. And the goal is to bring together bright minds to cover all perspectives – the researchers, the clinicians, industry and the people with OI and their families.

INGUNN