By Martin Banks - 2nd December 2010
There is still a long way to go
Amalia Sartori
A conference in parliament was told that the EU should give "higher priority" to researching rare neurological diseases.
The event on Thursday was told that some 33 million people in Europe suffer from one or more of the 6000 known rare diseases.
The commission recently announced that it will earmark €100m for research and innovation on rare diseases in 2011 as part of the seventh framework programme for research.
However, participants including scientists, researchers and doctors, said that more EU-wide action is needed to increase research into rare diseases and improve their early diagnosis and treatment.
Speaking at a news conference afterwards, a former Tory MEP John Bowis called on the EU to give a "higher priority" to the issue.
Bowis, who now heads a European commission project on healthy ageing, said, "It needs to move up the political agenda.
"We are specifically saying that this issue should have a stronger place in future EU research programmes.
"The onus is on both the EU and member states to do more to help those who suffer from a rare disease."
Italian deputy Amalia Sartori, who chaired the conference, highlighted the EU's efforts to better coordinate European research priorities and member states' national action plans on rare diseases.
"The path has been defined broadly but there is still a long way to go. This event has shown that more efforts need to be done to better support research projects on rare diseases, particularly neurological ones."
Meanwhile, the EU has also been urged to "show leadership" in tackling management of chronic diseases.
That was the message to emerge from another separate debate in parliament on Thursday, organised by the Belgian presidency of the EU and Health First Europe (HFE).
One of the speakers, Belgian health minister Laurette Onkelinx, said, "EU member states need integrated innovative care models when managing chronic diseases.
"The EU has been applying the "disease by disease" approach. Now it is time to have a holistic approach to chronic diseases bringing together different stakeholders in the discussion on the challenges our systems and our society are facing."
Chronic conditions and diseases are the leading cause of mortality and morbidity in Europe.
Including diseases such as diabetes, cardiovascular diseases, dementia, asthma or chronic obstructive pulmonary diseases, the WHO estimates that in the EU region, the costs of chronic diseases and their risk factors range up to 6.77 per cent of a country's GDP.
Bowis, who is HFE's honorary president and also took part in the HFE debate, said, "These long term conditions affect patients' quality of life and at the same time impose a serious burden on healthcare systems.
"Some of these diseases may not be curable but by providing new innovative treatments, healthcare authorities can help patients forget that they are patients."
