ERN BOND Workshop on Patient Priorities
The hybrid workshop “Patient priorities in ERN BOND beyond Quality of Life” is organised by ERN BOND – European Reference Network on Rare Bone Diseases and their patient representatives (ePAGs). It will take place on Saturday 6th of May from 9 – 4PM CET.
This 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
Location: Istituto Ortopedico Rizzoli, Via Pupilli 1, Bologna
Date: 6th May 2023, 9am-4pm (CEST)
Complete the registration form by April 30th 2023 for participating to the workshop.