EU focuses attention on rare diseases

Member states have been urged to show "more commitment" in tackling the issue of rare diseases.

At a public hearing in parliament on Tuesday, a senior commission official said much was currently being done to raise awareness of the issue, including the first European Day on rare diseases on 29 February.

But Nick Fahy urged EU member states to do more to address the problem.

Fahy, head of health information in DG Sanco, said, "There is an opportunity here for the EU and member states to set a lead on this issue.

"There is enormous potential but more needs to be done by member states themselves. It is surprising, for example, that relatively few countries make use of structural funds for investment in healthcare."

A public consultation on rare diseases, organised by the commission, ended on 14 February and Fahy said the executive would now come forward with a communication on the issue later this year.

"One of the things we are trying to address is to increase the visibility of rare diseases which, of course, could help individuals cope better," he told an audience of MEPs, lobbyists and journalists.

The hearing was jointly organised by the ALDE group and Eurodis, the European campaign body on rare disease.

The one day hearing heard from Lesley Green, from the UK, whose daughter Jennifer was diagnosed with cystinosis, a rare metabolic disease, in 1980. She died last March.

"My husband and I have experienced the emotions, difficulties and challenges faced by all those in the rare disease community," she said.

Rare diseases are life-threatening or chronically debilitating diseases that have a low prevalence in population, usually afflicting less than five in 10,000 people.

It is estimated that between 27 and 36 million people in the EU are suffering a rare disease and that 246, 000 are affected by less frequently-occurring diseases, affecting one out of 100,000 people.

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