Pain is reported to be the main challenge for people with OI besides fractures. More than 60 percent of people with OI have chronic pain, and the percentage and complexity increases with age. 83% of adults with OI have chronic pain.

In spite of this, there is very little information about how you can manage pain as a child or adult with OI. There is also little knowledge and awareness about different kinds of pain people with OI have, both among people with OI themselves and professionals.

Introduction video about the pain project

In the video below you can see a talk which explains the background for the projects, which was given by Ingunn Westerheim at the OIF Townhall meeting in autumn 2022.

An international resource group

On January 25th 2022 we organized the kick-off of the Pain & OI project, which is a collaboration between the OIFE and the OIF (USA). It includes a group of dedicated professionals who have experience in pain management, pain research and/or pain & OI. Originally it was thought to be more of a fixed expert group, but people change jobs, projects and priorities. So we have renamed it to an international resource group on pain & OI. We have also included some experts on other rare bone conditions than OI.

At the moment, the resource group includes ca 30 people from 12 different countries, covering both pediatric and adult professionals. It’s a multidisciplinary group which include PTs, orthopedic surgeons, endocrinologists, rheumatologists, anaesthesiologists, pain specialists, psychologists, pediatricians, researchers, nurses and a social worker. The group also includes professionals who have OI themselves. In addition we have representatives from OIFE and the OIF, who contribute with administrative support and input from the perspectives of adults with OI and parents of children with OI

We have agreed on the following common goals:

  1. Recommendations on how to assess pain in OI incl. different kinds of pain
  2. Recommendations on how to measure pain in OI in the clinic and in clinical trials
  3. Educational activities about OI & pain to various target groups
  4. A toolbox on management of chronic pain for children and adults with OI

We have had six constructive workshops in 2022 and 2023. Questions that have been discussed include: 

  • How does pain in OI differ from pain in other conditions?
  • What is the connection between OI pain & hypermobility, sleep, fatigue, soft tissue, inflammation, obesity and arthritis?
  • How can we prevent chronic pain by providing better acute pain management?
  • Do pain diaries make sense? Are people motivated to use them?
  • Will ICD-11 provide a better classification system for chronic pain?
  • What is the connection between pain and physical function?
  • What coping strategies are most beneficial when it comes to pain & OI? Do people with OI ignore (cope with) their pain for too long?
  • Are there any factors that help buffer mental health problems because of pain? Ex: peer support, parental support, coping, resilience etc.?

The pain and OI survey

In 2023 the OI Foundation and the OIFE partnered on a new project investigating the experience of pain for people with OI. The Pain and OI survey investigates the experience of pain for people with OI. The survey was for anyone 18 years old or older and was written with input from OI experts from North America and Europe. It was in English language only.

Through this survey, we want to learn more about the different types of pain people experience, severity of pain and frequency, and how it impacts people’s lives. Researchers from Baylor’s College of Medicine is now writing an article with findings from the survey.

In the meantime the OIF has made a summary which was published in the Breakthrough magazine. See below.

The Stockholm conference

Under the title “Balancing life with OI” we organized 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. The event took place at the Scandic Continental Hotel in Stockholm, Sweden, on 9-10 June 2023. More than 200 people took part both on site and online. See more information here.

Group photo from above of all participants
Group photo from above of all participants

Video collection about pain and OI on YouTube

Most of the talks and presentations from OIFE’s topical meeting “Balancing life with OI” in Stockholm June 2023 are now available with English subtitles in OIFE’s Playlist on YouTube:

You can have auto texting in other languages, by clicking on settings.

The various talks cover the causes, assessment, and management of pain in OI and other rare bone conditions. This in addition to pain’s impact on physical and mental health, sleep, fatigue, mobility, relationships/families, and work/life balance.

One of the talks given by dr. Jacqui Clinch from the UK was called “What are the causes and different kinds of pain in OI”

Toolbox on Pain and OI

We are currently working creating a toolbox on pain and OI. The aim of the toolbox is to enable people with OI to learn more about pain management. It will also include information and tips which you can discuss with your care provider when communicating around pain. What would YOU like to see included in such a toolbox? Please let us know what features and information you would like to see in a toolbox on pain management.  You can do this by sending an email to

I’ve Got Pains song and video

Remember the pain and OI video that had it’s pre-premiere at the “Balancing Life with OI” conference in Stockholm?

The song was previously awarded 3rd Place, 2023 IHDCYH Talks Video Competition and was officially launched in 2023 at Les Sommets du cinema d’animation in Montreal, Canada.

Now a shortlist of 61 films has been selected for the 5th Health for All Film Festival out of 940 entries received. The animation film “I’ve Got Pains” is one of the finalists.

Please visit this page for more information about the contest and to access the 2024 YouTube playlists. The OIFE community are encouraged to vote for and comment about the story/topic of the animation film on pain and OI, before the end of May 2024.


Comments can be posted on your social media using #Film4Health or through the posts inserted in the YouTube playlist. Some comments from the public will be featured during the HAFF virtual Awards Ceremony at the end of May.



Other pain related projects we are involved in

Qualitative Research on Patient Experiences of Pain in Osteogenesis Imperfecta. An interview-based study.
The aim of project is to support a pharmaceutical company in understanding the signs, symptoms, and impacts of osteogenesis imperfecta (OI), with a focus on pain, fatigue, and physical functioning in adults (≥18 years old), adolescents (12 to 17 years old), and children (eight to 11 years old) living with OI, with the goal of creating a better clinical trial. OIFE and OIF has been part of the steering committee and organizations in UK, USA, Australia and Spain have been asked to support the project.

EuRR-Bone Pain Study in OI
OIFE is represented in the Osteogenesis Imperfecta Study Group within the Core Registry platform of the registry EuRR-Bone. We invite you to participate in the upcoming “Pain Study in Osteogenesis Imperfecta (OI).” This initiative seeks to comprehensively evaluate chronic and acute pain experiences and assess the effect of various treatments among patients diagnosed with OI. Read more in this announcement.

Two pain projects in Norway
OIFE has also been involved with the following two projects related to pain in OI and rare bone conditions, that have been funded by the National Advisory Unit on Rare Disorders in Norway:

1) Pain in Osteogenesis Imperfecta Classified According to the International Classification of Diseases 11th Revision
2) Developing pain rehabilitation for people with rare bone conditions


Other resources on OI & Pain

Other resources on OI & Pain in Children

Video created by McGill University. 

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