Mar 30, 2025
The European Parliament has launched a public consultation on rare diseases, which is directly related to the European Reference Networks (ERNs). We encourage everyone to fill out the survey.
Purpose of the Consultation: This consultation aims to provide a foundation for the Committee on Public Health (SANT) in gaining a deeper understanding of the challenges faced by individuals affected by rare diseases and gathering the views of those working with or involved in rare diseases. It is open to all interested organizations, industry representatives, and NGOs, to share anonymous input on their challenges, needs, and expectations regarding future EU actions in the field of rare diseases.
The European Parliament has consistently emphasized the need for research and development in rare diseases. The results from this consultation will help shape future EU policies, including the reform of pharmaceutical legislation and other initiatives.
You can read more about the public consultation here: SANT launches public consultation on rare diseases | News | European Parliament
To complete the survey, please visit: EUSurvey - Survey
The survey closes at the end of March, so make sure to submit your responses before then.