Workshop “Patient priorities in ERN BOND beyond Quality of Life” organised by ERN BOND ePAGs
Venue: Istituto Ortopedico Rizzoli, Via Pupilli 1, Bologna
Date: 6th May 2023, 9am-4pm (CEST)
This hybrid workshop aims to explore four priorities identified for patients with rare skeletal disease, in a dialogue between patients and clinicians.
Workshop identified priorities:
- Pregnancy in rare bone disorders
- Transition from paediatric to adult multidisciplinary shared care for rare diseases
- Movement analysis /mobility functional limitation
- Pain in rare bone disorders
Complete by 30th April 2023 the registration form for participating to the workshop.
ERN BOND clinicians and experts are warmly invited to take part to the RBD patient organizations’ workshop.