To mark Rare Disease Day 2026, the Integrated University Hospital of Verona and Paediatrics C are collaborating with various associations to organise an event dedicated to stories of care, family bonds, and the courage that accompanies the journey of living with a rare disease in childhood.
This meeting provides a platform for reflection and discussion on the path from diagnosis to multidisciplinary care for children with rare diseases.
Particular focus will be given to the psychological needs of siblings (Rare Siblings) and the vital role of associations in supporting families.
Through testimonials, stories and narrative medicine tools, the event will highlight the power of storytelling as a means of care, raising awareness and encouraging sharing. There will also be an opportunity to present the results of workshops carried out by children and young people.
Running alongside the conference will be workshops dedicated to children, incorporating narrative medicine and pet therapy activities to create a welcoming and inclusive environment for all.
The event is intended for families, healthcare professionals and the general public, with the goal of promoting an integrated approach to care and strengthening the support network for children with rare diseases and their families.
Event Summary
| Event | Growing together. Stories of care, bonds and courage |
| Date | 27 February 2026 |
| Location | Centro Medico-Culturale “G. Marani”, Verona (IT) |
| Download | Programme |
Funded by the European Union
“Funded by the European Union. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or HaDEA. Neither the European Union nor the granting authority can be held responsible for them.”
