“It’s Rare for Me” Art Exhibit at the European Parliament [Advocacy Lab]

This event video brings together short interviews with representatives from Chiesi, Members of the European Parliament, patient advocates and patient organisations, recorded at the opening ceremony of the “It’s Rare for Me” art exhibition at the European Parliament in Strasbourg. Speakers reflect on the realities of living with rare diseases and the importance of innovation that addresses both medical needs and quality of life.

The conversations also examine the EU policy framework for rare diseases, acknowledging progress through existing initiatives while highlighting the need for greater coherence, stronger coordination and sustained political attention. With perspectives from across policy, industry and civil society, the video underlines the urgency of EU‑level action to reduce disparities and ensure that the voices of people living with rare diseases remain central to decision‑making.