ADVOCACY

OIFE in Bologna

The OIFE was well represented at the spring meeting of the European Reference Network for Rare Bone Diseases (ERN BOND) in Bologna the first week of May. ERN BOND brings together 53 health care providers (hospitals) that deal with rare bone conditions.

40 people attended face to face and 13 online. In addition to several members of the OIFE MAB, Rebecca and Claudia represented OIFE and Inger-Margrethe and Leonardo from the Norwegian (NFOI) and Italian OI-organization (ASITOI) were there.

Future plans and priorities in the European Reference Network were discussed. On May 6th the seminar “Patient priorities in ERN BOND beyond Quality of Life” took place, organized by the patient representatives in ERN BOND. The aim was to shine a light on four priority areas, identified by in a dialogue between patients and clinicians.

Topics included pregnancy, movement analysis and mobility, transition and pain.

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