Eurobarometer: Rare disease awareness
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.
John Dalli, European Commissioner for Health and Consumer Policy, said: "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. On this 4th World Rare Diseases Day, 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."
