THE family of a teenage girl suffering from a painful skin disorder has given a cautious welcome to a European pledge which offers new hope to sufferers of rare diseases.

Fourteen-year-old Amy Livesey suffers from a genetic condition that leaves her covered in blisters and means almost her entire body must be wrapped in plastic film for protection against the slightest knock. Her illness, Epidermolysis Bullosa, has repeatedly blistered her throat so badly that she cannot swallow food.

But help could now be on the horizon for Amy, from Tunstall, near Catterick, North Yorkshire.

The European Parliament has made £600,000 available to help finance the approval process for so-called "orphan drugs", which could relieve the misery for sufferers of rare diseases.

Although an effective treatment for Amy's condition could be years away, her mother Julie yesterday welcomed the move. "It's not going to make a difference at the moment but it is a step forward.

"When we get to the stage of having devised a way to cure it or stop the blistering, that's when this is going to be of benefit to us," she said. "Hopefully the money they put into this will have increased by the time we are in a position to develop something."

John Dart, of the Dystrophic Epidermolysis Bullosa Research Association (Debra), said: "We don't yet have something sitting in our lap which would make an enormous difference, but we hope to be in that position in a couple of years or so. There are a lot of good signs that what we are wanting to do could be possible and this is certainly very welcome as it puts the framework in place."

David Bowe, Euro MP for Yorkshire and the Humber, who campaigned for the latest development, said there were already about 50 different treatments awaiting approval from the European Drugs Agency.

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