By Martin Banks - 12th January 2011
At present, there are very wide differences between member states when it comes to access to treatment for people with a rare cancer
Petru Luhan
A conference in parliament was told that both the EU and member states should be pressed to raise awareness of rare cancers.
The event on Wednesday heard that this could help speed up diagnosis and follow-up treatment for sufferers.
Data presented to the conference reveals that some 2.7m people in Europe have a rare cancer - defined as a type of cancer which affects five or fewer people in 10,000.
An estimated 23 per cent of all cancers are deemed to be "rare" while, on average, some 240,000 Europeans are likely to die each year from a rare cancer.
Even so, the conference was told that awareness of rare cancers remains "very" low while other problems for victims include late or incorrect diagnosis and lack of access to appropriate therapies and clinical expertise.
The conference, organised by the Forum Against Cancer Europe, heard from Romanian MEP Petru Luhan who said such "alarming" figures "should send a clear signal" of the need for urgent action to tackle the problem.
"If we are going to properly address this issue we desperately need to raise awareness of rare cancers."
Luhan, who co-hosted the event, said that equal access to treatment was another major issue which requires "urgent attention."
He said, "At present, there are very wide differences between member states when it comes to access to treatment for people with a rare cancer."
One of the keynote speakers, Henk Van daele, a retired Belgian schoolteacher, told of the "loneliness" he experienced when he was diagnosed with breast cancer.
"There seemed to be little support and even less awareness of the condition among men like me," he said.
An average of 80 men in Belgian are diagnosed with breast cancer each year, compared with 9000 women, a figure which is falling because of the success of breast cancer screening programmes in many member states.
Van daele, of the European cancer patient coalition, said there was an urgent need to raise awareness of rare cancers, such as male breast cancer.
"This applies not only to the general public but to doctors many of whom never come across such cases," he said.
He also advocates a "strengthening of partnerships" with EU institutions and increased support for all existing rare cancer groups.
He also says national cancer registers should be forced to register all rare cancers and research into rare cancers to be improved.
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