Rare diseases under spotlight
Wednesday February 29th, 2012
Campaigners are using Rare Diseases Day, today, to highlight the risks and needs of obscure illnesses.
In Nottingham, UK, experts highlighting children's brain tumours were backed by a newly launched European campaign.
About 450 children a year are diagnosed with tumours in the brain.
Professor David Walker, a researcher at Nottingham University, told how his centre is working with other organisations to raise awareness of symptoms.
He has also ensured the issue has been taken up at the European Parliament.
He said: "Brain tumours in young people are comparatively rare and we are not trying to cause parents unnecessary alarm. However, they do happen and, because the symptoms often mimic other common less serious illnesses they can be very difficult to diagnose."
The Headsmart awareness campaign went European today with backing from the European Society for Paediatric Oncology.
The project is now being launched in Denmark, Sweden, France, Germany, Austria, Poland and Spain.
Meanwhile the charity Action Medical Research highlighted the £100 million it has invested into research into these illnesses over the last 60 years.
Caroline Johnston, of AMR, said: “Thousands of families across the UK are coping with the challenge of caring for a child with a rare and devastating disease for which there is no cure.
"Action Medical Research brings hope to these forgotten families by supporting research for genetic factors that cause distressing and disabling rare conditions.”
Tags: Cancer | Child Health | Europe | General Health | UK News
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