Balancing life with OI – Stockholm, Sweden (2023)

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.

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

  1. Healthcare professionals and researchers with an interest in osteogenesis imperfecta in general
  2. Healthcare professionals and researchers with an interest in pain, fatigue, sleep and mobility etc
  3. OI community (people with OI, family members, staff and volunteers)
  4. Professionals and people connected to other rare bone diseases
  5. Industry representatives

Get an impression of our event

Photos from the event can be downloaded from our gallery.

Also check out reports from Board member Jacob Wittorff and the German speaking delegates and impressions from some of the participants.

The abstract book can be downloaded here.

The recorded talks from the conference can be watched on our YouTube channel in the playlist “Balancing Life with OI“.

Subtitles in English are available in all videos, including auto translation if you turn it on.

See, Hear, Smile! – Riga, Latvia

The goal of “See, Hear, Smile!” was to create an arena to present newer research and treatment methods related to eyes, ears and teeth of people with OI. Ca 85 people from 22 countries met from June 14-15, 2019 in Riga, Latvia. The topic also included neurological issues affecting the head/brain (basilar invagination). Some lectures relevant for other rare bone diseases were also included.

Target groups were:

  • Dentists, orthodontists and other professionals working with teeth & jaws
  • Clinicians & researchers with an interest in eyes & ears in OI
  • Clinicians & researchers with an interest in OI in general
  • OI-community (people with OI, family members, staff and volunteers)
  • Professionals & people connected to other rare bone diseases

The abstract book can be downloaded here.

Presentations (PPT) can be downloaded here. The lecture about basilar invagination (BI) was prerecorded on video and can be seen on YouTube.

Participants of topical meeting See, Hear, Smile!
Participants at See, Hear, Smile!

Soft Tissues & Soft Issues – Oslo, Norway

From September 17 – 18 in 2015 more than 70 participants from many countries met in Oslo, Norway for the Topical Meeting on non-skeletal issues. “Soft Tissues & Soft Issues – OI in adults is more than fractures” focused on the health issues of adult people with OI, especially the non-skeletal problems such as:

  • Soft tissues (muscles, tendons, ligaments etc)
  • Chronic pain and fatigue
  • Gastric issues and kidneys
  • Pulmonary issues
  • Cardiac issues
  • Strategies and follow-up routines

The abstract book can be downloaded here.

Group photo from Oslo
Participants at Soft Tissues & Soft Issues

“Fragile Bones – Unbreakable Spirit?” – Lisbon, Portugal

In 2012 we organized a topical meeting called “Fragile Bones – Unbreakable Spirit?” about the psychosocial aspects in OI. 55 participants from 16 countries came together in Lisbon, Portugal from October 26-28, 2012 to discuss issues like:

  • Parenting / parenthood and the effects on non-affected siblings
  • How to handle the fear of fractures?
  • Partners, friendships and sexuality
  • Achieving a positive self image
  • Family tensions, overprotection, guilt
  • Positive sides of life with OI
  • Issues for adults
  • Comparison between OI and other chronic diseases and healthy people
  • Invisible problems
  • Stigmatisation
  • Support from within the OI community
  • Social fear, fear of groups
  • Pressure to achieve to your parents
  • Letting go of your OI child
  • Mental preparation for surgery

The abstract book can be downloaded here.

Participants of Lisbon-meeting

“OI in Motion”, Rheinsberg, Germany

The topical meeting “OI in Motion” on rehabilitation and physiotherapy in OI, welcomed some 80 participants from 18 countries from November 20-22, 2009 in Rheinsberg, Germany.

Several treatment concepts (e.g. post-surgery rehabilitation, rehabilitation of children etc.), spine surgery, special equipment, hydrotherapy, studies in adults, psychology and lever arm studies where presented. Following each presentation there was time scheduled for questions and discussion. Participants gave input from different angles which provided for an often lively discussion. Several workshops explained about exercise programs while manufacturers of rehabilitation equipment presented some of their materials suitable for people with OI.

The abstract book can be downloaded here.

Orthopaedic Aspects in OI

On June 9 in 2006 around 40 orthopedists worldwide attended the first Topical Meeting in Rome hosted by OIFE and ASITOI. At a “round table” limb surgery procedures (for instance surgical procedures femur, tibia, arm, omerus,
pelvis deformation) and spine surgery (e.g. surgical indications, preparation, halo traction, intensive care and rehabilitation) were presented and discussed.

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