Wednesday 25 February @ 11:00 CET

On Wednesday, ECR MEPs Diego Solier and Maria Teresa Vivaldini will host an event dedicated to raising awareness of the daily reality faced by people living with Epidermolysis Bullosa (EB) and their families.

The initiative aims to sensitise European institutions and create a meaningful space for dialogue between patients, foundations, healthcare professionals and policymakers. The focus will go beyond the medical dimension of the disease, highlighting its profound human, social and emotional impact. We will hear first-hand testimonies from children, young patients and family members, alongside contributions from foundations and organisations working on research, family support and improving quality of life.

The discussion will also underline the importance of sustained European commitment to research, access to treatment, specialised care and adequate public policies for rare diseases. The event seeks to ensure that the voices of those living with EB are heard and fully considered in decision-making processes. Link to event website here.

When: Wednesday @ 11:00

Where: Room TBC, European Parliament