Eurobarometer survey reveals awareness and support for rare diseases amongst EU citizens
Published on 28 February, in honour of the fourth International Rare Disease Day, the European Awareness of Rare Diseases Report presents the results of a Eurobarometer survey conducted by TNS Opinion & Social at the request of the Directorate General for Health and Consumers (DG Sanco) and coordinated by Directorate General Communication.
Seeking to gauge the awareness for rare conditions as well as the level of public support for European-level measures, the survey found that “…approximately 2 out of every 3 respondents know that rare diseases affect a limited number of people and require very specific care. Almost 1 in every 5 personally knows of someone suffering from a rare disease”. While there were “significant differences” in awareness between the Member States, some “…95% of respondents believe there should be more European cooperation in this area and that rare disease patients should have the right to access appropriate care in another Member State”. The survey, in the form of questionnaire, was undertaken in each of the 27 European Union Member States, with approximately 1000 citizens from each country participating, for a total of 26,574 interviews. The release of the report coincides with the formal adoption of the Cross Border Healthcare Directive – legislation of particular relevance to rare disease patients and their families (consult the accompanying news article). In a press release, John Dalli, European Commissioner for Health and Consumer Policy, stated: "I am encouraged to see that EU citizens want more European co-operation on rare diseases. This is important, because the required medical expertise may not be available within national borders. ...I want to stress that the European Commission is engaged in added value action to help citizens access the care they need across the EU".
While the results of the Eurobarometer survey are clearly encouraging, rare disease stakeholders cannot rest on their laurels. The assessment found that detailed knowledge of rare diseases and available resources was scant, despite support for national and European-level action as well as improved research, access to care and awareness-raising. Nevertheless, the key finding of the survey is that “…the European public almost unanimously supports a coordinated EU strategy for improving the treatment of people suffering from rare diseases. It is only within the context of other major national health issues that respondents are slightly less supportive although even here the majority of Europeans are still willing to make rare diseases a priority”. The full Eurobarometer report is available in English language. French and German versions will be available soon. Fact-sheets for each of the Member States are available in the country's EU language and also in English.
(Click on the image to consult the Eurobarometer report)