Balancing Life with OI


Stockholm Sweden


9th to 10th June 2023



This conference was organised by OIFE in collaboration with the Swedish OI-organisation, SFOI.

Lack of understanding and poor management of pain severely impacts the quality of life of children and adults with osteogenesis imperfecta (OI).

Under the title, “Balancing life with OI” OIFE are organising a topical meeting on the neglected subject of the causes, assessment and management of pain in OI and its impact on physical and mental health, sleep, fatigue, mobility, relationships/families and work/life balance.

Anyone interested in the topics is welcome to attend, including:

  • Healthcare professionals and researchers with an interest in OI in general
  • Healthcare professionals and researchers with an interest in pain, fatigue, sleep and mobility etc
  • OI community (people with OI, family members, staff and volunteers)
  • Professionals and people connected to other rare bone diseases
  • Industry representatives


Delegate Conference Report

By Coreen Kelday (Support Development Officer)
Balancing life with OI and Pain – Stockholm, Sweden 2023


On the 9th June 2023, along with colleague Penny Clapcott, layperson on our Scientific Advisory Board, we attended the Pain Conference run by OIFE (Osteogenesis Imperfecta Federation Europe). 180 participants from 20 different countries attended the event. The Topics covered included: living with pain, assessments and measurement, impact of pain, and managing pain.

A number of UK NHS OI Healthcare professionals from both paediatric and adult services were in attendance.

We heard how pain can have an impact on both physical and mental health, sleep, fatigue, mobility, relationships/families, work/life balance and more.  Pain is complex and requires a multi-disciplinary approach. It was therefore fantastic to see healthcare professionals of all disciplines, such as rheumatologists, endocrinologists, orthopaedic surgeons, physiotherapists, occupational therapists, nurses and psychologists (to name a few) share ideas and practices discussing issues such as: “what is pain?”, “what are the causes?”, “what types of pain exist?”

It has a very busy weekend full of presentation and information but also full of collaboration, friendship and lots of ideas!


Delegate Conference Report

By Penny Clapcott (Layperson member of BBS Scientific Advisory Board)
Balancing life with OI and Pain – Stockholm, Sweden 2023


Pain is a Daily Occurrence

The programme covering the impact of pain in OI was jam-packed with a variety of talks. As we all know, pain is a daily occurrence for us OI’ers so it was great to have 2 days dedicated to hearing about all different aspects of pain from a variety of perspectives.


Pain from Different Angles

The conference started off with talks about different pain and the impact it has on us from different angles, assessing pain in children and adults along with the pro and cons of different tools along with many other topics.


Pain Studies & Outcomes

An interesting discussion was about how to assess pain outcomes in studies to ‘prove’ the study works in reducing pain. A lot of previous studies/research concentrated on reducing the rate of fractures as the primary end goal but as recent OI voices have been heard, we want a reduction of pain to be the end goal. As pain is a very personal thing people go through and experience it different it can be challenging how to define and assess pain. It was interesting hearing some of the ways this might be possible (assessment and tools) along with listening to a small panel discussion about how research can move forward.

Other topics included pain, sleep and fatigue, neonatal care, new techniques to surgeries, dental care, muscular care, pain in GI and the use of new technology such as VR headsets. At the conference we heard from 4 studies going on at the moment which were; Project Saturn (Mereo BioPharma), Cosmic and Orbit (Ultragenyx), BOOSTB4 (Boost Pharma) and TGF-Beta antibody (Sanofi) which were all in different stages from stage 1 to stage 3 of clinical trials. They each sounded interesting where they appeared to be making positive progress.


Surveys do Matter

The OIFE recently did a very expansive survey dedicated to the impact of pain and it was quite amazing to hear so many anonymous testimonies that I could relate to. It certainly made me and others in the room to not feel so alone with everything we go through. It really was quite reassuring to know that there are a lot of studies going on across the world to try to help OI’ers.


Collaboration & Managing our Pain

We are often caught up in our own day to day management of our OI, some of us may be involved with some of the projects but I personally didn’t know how many are actually currently running, there is more going on than ever before specifically for OI. It was great to know how many collaborations going on with other rare bone diseases where we really do share a lot of common ground, especially with managing pain. Sadly, we do have a long way to go with regards to better pain management but incredible to think of many things going on in the background.


Keep up to date on Pain

I just ask that the OI community try their best to keep up to date with various surveys so the Drs/Researchers can learn to help us for the future and the future generations that come after us and if you feel its suitable, join up with researching going on. I’m sure the BBS will be able to point you in the right direction.


If you’re interested in learning more about the OIFE conference, such as abstracts and case studies discussed, head to the OIFE website.



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