Central Europe draw up rare diseases battleplan

26th August 2009, Comments 0 comments

Six countries have agreed to each set up centres of expertise by 2010, each specialising in a list of rare diseases to avoid duplication.

Vienna – Six central European countries agreed on Tuesday a joint programme  to boost cross-border funding for the research and treatment of rare diseases.

Experts from Austria, Czech Republic, Germany, Hungary, Italy and Slovenia met on Monday and Tuesday in the Austrian town of Salzburg to present national action plans and improve coordination between their centres of research.

The informal meeting was a follow-up to a conference of EU health ministers in Salzburg last year, which first called for cross-border cooperation in the neglected field.

"There is hardly any other area in which international networking can promise such widespread improvement as with rare diseases," said Guenther Leiner, head of the European Health Forum Gastein, which co-organised the meeting along with Austria's health ministry.

"The small number of cases in each country means that rare diseases are often not taken into account in allocating research funds, and doctors lack experience in diagnosing and treating (these illnesses)," he told a press conference.

The six countries have now agreed to each set up centres of expertise by 2010, each specialising in a list of rare diseases to avoid duplication.

The aim was to create a network of experts and facilitate knowledge transfer between the participating states.

Coordination bureaus will also be set up to provide a link with patients and doctors.

Several thousand rare diseases are currently known, such as epidermolysis bullosa or butterfly disease, whose patients suffer from very fragile skin, and other metabolic disorders.

Cooperation between the six central European countries will later extend to other EU states, Robert Schloegel from the Austrian health ministry said.

AFP / Expatica

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