Eurobarometer survey “European Awareness of Rare Diseases ” shows strong public support for rare disease patients

An EU-wide (EUROBAROMETER) survey published March 1st 2011, 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 survey, which was conducted amongst 26 574 EU citizens in all 27 Member States between 25 November and 17 December 2010, examined Europeans’ awareness and knowledge of rare diseases and their support for policy initiatives and actions taken at national and EU level.

Key findings from the survey:

Strong support for action at National and European level

* Almost all agree that national health authorities should give support to those suffering from rare diseases (96%) and fully reimburse their medication, even if it is very expensive (93%).

* 95% agree that there should be more European cooperation, and that those affected should have the right to access appropriate care in another Member State. There is also wide support for introducing national strategies for rare diseases.

Support for improved research, access to care and awareness raising:

* Over 90% of respondents agree that allocating resources for research, access to treatment, communication and patient support is justified.

* Almost all (96%) agree that resources should be allocated to help people suffering from rare diseases access drugs. Only 2% were opposed to this.

* 60% agree that allocating resources to improve awareness of rare diseases is justified and a further 33% think it is somewhat justified.

Good general understanding, but detailed knowledge and awareness remain low

* 63% chose the correct definition of rare diseases, while a minority (14%) believe that these are conditions that cannot be treated and that nobody cares about.

* 17% of those surveyed know someone suffering from a rare disease, but a larger proportion (40%) have never heard of anyone affected.

Click here to read the full report in all EU languages

Click here to read the Press Release from the European Commission

Eurobarometer is a series of surveys regularly performed on behalf of the European Commission since 1973. It produces reports of public opinion of certain issues relating to the European Union across the member states. The survey on “European Awareness of Rare Diseases” is a Special Report (361). It was conducted by TNS Opinion & Social at the request of the DG Health and Consumers. The Survey was coordinated by the DG Communication.