NORTH-EAST members of a support group for sufferers of a rare incurable condition are furious that they have had to provide the cash to save a threatened research unit.

The only research unit in the country for Ehlers-Danlos Syndrome (EDS) is based in Cardiff, but its funding ran out last month.

The little-known disorder weakens the skin, ligaments and internal organs.

To keep the research going, the EDS support group gave £54,500, from a series of fundraising events. But cash from the Medical Research Council for the Cardiff clinic, run by Professor Mike Pope, has recently dried up.

Rae Mould, from Rufforth near York, got involved in the EDS support group after her daughter, Jackie died.

She said: "Health authorities throughout the UK are continuing to send their patients to Cardiff to be diagnosed even after the money ran out.

"Anybody being diagnosed now is being diagnosed with EDS money and not on the NHS.

"What we would like is to be on the same footing as every other medical condition."

She said: "It's very distressing. The people who have held the coffee mornings to raise the money are the same people who need the help."

Gail Barber, whose 12-year-old daughter Aimee has the life-threatening condition, has written to Prime Minister Tony Blair, her local MP about the centre.

Mrs Barber, from Trimdon Village, County Durham, has also written to Health Secretary Alan Milburn and others but, despite some encouraging words, feels she has made little progress.

She said: "The support group is run by people with Ehlers-Danlos and all of that money has come straight from their bank.

"I'm getting very angry about this. I feel as though I'm just banging my head against a brick wall."

The EDS support group can be contacted on (01252) 690940.