In 2018, ECTS envisioned the creation of a European Multi-Stakeholder Network for Rare Bone conditions with the objective to provide a platform where representatives from research, medical and patient communities can meet, learn from each other, and review key topics in the field of Rare Bone conditions. The primary aims were to create a sense of community and collaboration to provide an opportunity for patient organisations to engage with research, to hear the latest developments and discuss ways to collaborate.

That year, ECTS organised a Patient Group Leaders Meeting during the ECTS Annual meeting in Valencia, Spain. This was the first step towards the creation of the network that helped to set the focus and plan upcoming activities.

The project ended up on hold, but driven by the value of patient-led initiatives, Ingunn Westerheim (OIFE) and Inês Alves (ANDO Portugal) picked up this valorous work firstly conducted by ECTS, to push it forward into the invitation for a European Network for Rare Bone conditions in June 2019. This happened during the ICCBH conference in Salzburg, and resulted in the approval for the creation of the European Rare Bone Forum in November 2019, in Amsterdam.

The ECTS is the backbone of the ERBF and we led together this European initiative towards reducing the time for research and fostering collaborative work in Rare bone diseases.