Special Eurobarometer 361: European awareness of Rare Diseases

A Eurobarometer survey published today on the 4th World Rare Disease Day reveals that Europeans have a relatively accurate understanding of what rare diseases are but detailed knowledge and awareness remain low. The European public expresses strong support for policy initiatives linked to rare diseases at both national and European level, and Europeans see the actions of allocating resources to improve research, ensuring access to care and raising awareness as highly justified. However, significant disparities between Member States remain.
The European Commission promotes joint actions which will help patients and professionals share expertise and information across borders with the objective of reducing the number of people suffering these type of diseases, preventing newborns and young children dying from them and improving the patients’ quality of life.
Specific measures have been adopted by the Commission, including:
- improving recognition and visibility of rare diseases;
- supporting national plans for rare diseases in EU member countries;
- strengthening European-level cooperation and coordination;
- creating European reference networks, linking centres of expertise and professionals in different countries to share knowledge and identify where patients should go when expertise is unavailable in their home country;
- encouraging more research into rare diseases.

The results by volumes are distributed as follows:

• Volume A: Countries
• Volume AA: Groups of countries
• Volume A' (AP): Trends
• Volume AA' (AAP): Trends of groups of countries
• Volume B: EU/socio-demographics
• Volume B' (BP) : Trends of EU/ socio-demographics
• Volume C: Country/socio-demographics

Researchers may also contact GESIS - Leibniz Institute for the Social Sciences: https://www.gesis.org/eurobarometer