EU Set to Increase Cooperation on Rare Diseases

Tackling rare diseases has been on the European Union's agenda for years, but concrete action is still pending. Experts and several members of the European Parliament are now calling for action: there should be "a seamless cross-border exchange of data as soon as possible to support research on diagnosis, treatment and care."

The EU aims to achieve its ambition of tackling rare diseases, with France - as a long term champion of EU cooperation in this area of unmet medical need - due to put the topic on the agenda of its upcoming presidency of the Council.

The issue has been on the EU agenda or years, since there are 30 million patients in the bloc and there is only treatment available for 6% of the diseases.

What is needed?

An outline of what is needed has already been drawn up in the Rare 2030 foresight study. It includes eight recommendations for tackling rare diseases at an EU level, including a call for better cross-border data sharing to underpin the development of treatments and health services.

“You can’t understand a disease mechanism, impact or potential solution if you don’t reach a threshold of data, so clearly you must share the scarce data that you do have. Absolutely fundamental to this is that it has to be transnational,” Anna Kole, the coordinator of the project behind the Rare 2030 study, told Science|Business.

Partnership in the works

Data sharing is significant to enabling EU wide cooperation on rare diseases, from improving understanding of the natural history of these diseases, to ending the diagnostic odyssey that so many rare disease patients endure, and to the development of new treatments. As the Commission prepares to build the European health data space to promote better exchange and access, there is some movement in the process. 

A new plan

The ultimate goal is a plan for rare diseases that would set out objectives and policy recommendations for member states, and the French presidency is expected to open the discussion on a proposal for such plan, according to sources.

Read the full article on Science|Business

Source: Science|Business

Medicine

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