From May 28-29 the the different clinicians and patient representatives from European Reference Network on Rare Bone Diseases (ERN BOND) were meeting in Oslo at their annual meeting. OIFE was represented by Rebecca T. Skarberg (ERN BOND epag) on site and Ingunn Westerheim, who took part online.

Topics covered were joint replacement in OI and other rare bone conditions, ERN BOND projects on transition, genetic testing, registries, European case discussions and clinical decision making on orthopaedic surgery.

Natasha Appelman-Dijkstra gave an update on EuRREB – the European Registries for Rare Endocrine and Bone conditions and encouraged all the clinicians to take the new survey on OI and treatment initiation.

After hearing about different overarching research initiatives, the ERN BOND Plenary Meeting in Oslo brought together representatives from key international scientific societies to discuss ongoing collaborations and future opportunities. The purpose was to share information from the different societies to exchange ideas and avoid duplication of efforts.

The session featured contributions from:

  • Joachim Horn on behalf of EPOS – European Paediatric Orthopaedic Society
  • Ralph Sakkers representing the International OI Surgeons Group led by Dr Richard Kruse from the USA
  • Natasha Appelman-Dijkstra from European Calcified Tissue Society – ECTS
  • VALERIE Cormier Daire representing ESHG – European Society of Human Genetics
  • Karen E. Heath on behalf of the International Skeletal Dysplasia Society (ISDS)

The morning program concluded with a presentation by MetabERN Coordinator Maurizio Scarpa on the Health Leadership Mission for Rare Diseases Initiative, where OIFE is also involved in one work package.

Representatives from the European Patient Advocacy Groups (socalled ePAGs) are patient representatives who collaborate and actively participate in the work of the European Reference Networks (ERNs). After the Annual Meeting of ERN BOND, Rebecca T. Skarberg and the other ePags hosted a workshop for the Norwegian patient groups for rare bone conditions. The purpose was to spread awareness about ERN BOND, but also to discuss patient priorities in the future planning of the network activities.