Annabelle Calomme and Joke Wuyts (Rare Diseases Team, Sciensano) were invited to present the results of the report “In-depth analysis of the public consultation of the European Parliament on rare diseases” before the standing committee for public health (SANT)  on 1 December 2025.

The in-depth analysis and drafting of the report were carried out by the Sciensano Rare Diseases Team, on behalf of the Policy Department for Transformation, Innovation and Health, at the request of the SANT Committee.

The public consultation conveyed a clear and urgent message: despite notable progress in recent years, people living with rare diseases continue to face profound and persistent inequalities across Europe. Respondents highlighted several key challenges, including prolonged diagnostic delays, major gaps in treatment availability, significant geographical disparities in access to specialised care, barriers to the use of cross-border healthcare, insufficient patient involvement in decision-making and care planning, as well as the need for stronger support for research and data sharing.

Taken together, these findings provide a robust evidence base to inform future European policy action and underline the necessity of strengthened and coordinated efforts to ensure that no person living with a rare disease is left behind.