Europeans support EU cooperation in rare disease research and access to appropriate care

On the occasion of the 4th World Rare Diseases Day, a Eurobarometer survey shows that up to  95% of EU citizens 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. These kind of diseases affect up to 36 million Europeans who are in need of proper diagnosis and treatment.

A disease or disorder is defined as rare in the EU when it affects fewer than 5 per 10,000 citizens. On the 4th World Rare Diseases Day, a Eurobarometer survey shows that although there is a good general understanding, further detailed knowledge and awareness is still required. Figures show that 63% of the surveyed 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. Only 17% know someone suffering from a rare disease, but a larger proportion (40%) have never heard of anyone affected.

The European awareness survey on rare diseases was conducted in all 27 Member States between 25 November and 17 December 2010, in order to examine Europeans' awareness and knowledge of rare diseases and their support for policy initiatives and actions taken at national and EU level. In this field, the European Commission adopted a Communication on Rare Diseases in 2008 and later on, a Council Recommendation on Action in the field of Rare Diseases was adopted in 2009. The Commission has also established an EU Committee of Experts on Rare Diseases (EUCERD) which met for the first time on December 2010.

The Commission promotes joint actions which help patients and professionals share information and expertise across borders. Specific measures on improving visibility of rare diseases, supporting national action plans, strengthening European level coordination and cooperation and encouraging more research have been adopted by the Commission.

Citizens' support to EU action on rare diseases

Almost all surveyed citizens, a 96%, agreed that national health authorities should give support to those suffering from rare diseases and fully reimburse their medication. They think so, even if this medication is very expensive in 93% of the cases. Furthermore, 95% agreed 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.

Regarding communication and awareness, over 90% of respondents agreed that allocating resources for research, access to treatment, communication and patient support is justified. As highlighted by the publication of the book “The Voice of 12,000 Patients”, there is still a lack of awareness whcih leads to delayed diagnosis, and often misdiagnosis. In this respect, 60% agreed that allocating resources to improve awareness of rare diseases is justified and a further 33% think it is somewhat justified.

Given that many rare diseases affect only a few individuals in any given country, the added value of European and international research cooperation is immense. Since 1998, the EU's Research Framework Programmes have allocated more than 500 million euro to 156 projects linked to rare diseases. The Commission is committed to investing at least a further 100 million euro under its next calls for proposals in summer 2011.