News item

Archive of: March, 2011

  • European awareness of rare diseases

    An EU-wide survey published on Rare Disease Day (28th February) shows that a relatively large number of Europeans (63 per cent) know what rare diseases are, but that detailed knowledge and awareness are lower (40 per cent had never heard of someone affected by a rare disease). The European public expresses strong support for policy initiatives linked to rare diseases at both national and European level. On average, over 90 per cent of Europeans agree that resources should be allocated to support those with rare diseases, improve and coordinate research, ensure access to treatment and raise awareness of rare diseases. Opinion becomes more divided when other health issues are taken into account but remains supportive.

    UK levels of awareness and support tend to be similar or somewhat lower than the EU average. 90 per cent of UK respondent, however, had heard of cystic fibrosis, 82 per cent Huntington’s disease and 81 per cent haemophilia. These results are significantly higher than the EU averages.

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