I have the great pleasure to chair the ECTS Rares Bone Diseases Action Group along with Willem Lems. The group includes N. Appelman-Dijkstra (NL), G. Clunie (UK), C. Grasemann (Germany), Adalbert Raimann (Austria), H. Siggelkow (Germany), L. Sangiorgi (Italy).
These dynamic group is focused on actions on the knowledge in rare bone diseases. Until now, the group was dedicated to clinical issues as the awareness of the rare diseases, the dissemination of the current knowledge and the new treatments. We will now open to scientists to explain their approaches in deciphering the pathophysiology of this large group of diseases. N. Appelman-Dijkstra will co-chair the group from September 2024.
Our tasks are to:
- Organize webinars inviting experts of each rare or ultra-rare diseases
- Promote guidelines and initiatives
- Contribute to European registries
- Support new projects dedicated to a special disease upon the request of ECTS members
- Interact with other muskulo-skeletal societies such IFMRS or SCCBH
- Liaise ECTS to the European reference center dedicated to bone (ERN Bond)
We have an annual face-to-face meeting at the ECTS Congress and regular meetings by videoconference.
Scientists or clinicians, If you are active in the field of Rare Bone Diseases and if you would like to join us, please don’t hesitate to contact us.