VOLUNTEERS at a Torbay charity supporting patients with one of the world's rarest diseases are celebrating after receiving a £350,000 grant.

The people at the Paignton-based Alström Syndrome UK were today given the much-needed funds by the Big Lottery, with the aim of promoting far-reaching research.

Alström syndrome affects an estimated 60 people in the UK, although it is thought there could be up to 1,000 others who are unaware they have the disease because it is so rare and complex.

The syndrome first affects sight, but then progresses to affect hearing, the heart and kidneys, as well as causing severe early onset diabetes.

Kay Parkinson, who lives in Paignton, is the ASUK founder and a tireless campaigner for Alström patients.

Her 24-year-old daughter Charlotte suffers from the disease and is currently awaiting a heart and kidney transplant.

She added: "The grant is fantastic news and could open up a whole new world for those who suffer with Alström.

"It is rare to have research into so many organs of the body.

"It will be truly cutting-edge and hold so much promise for many others suffering from debilitating diseases as well.

"We shall also have at the end of it the first-ever clinical database of Alström patients, which will be housed at Birmingham.

"This project demonstrates what patient groups can achieve when supported by dedicated doctors.

"Research will improve the use of current treatments and help identify new therapies, including the possibility of implanting healthy stem cells in patients to combat the disease.

"Millions more people suffering from heart and kidney problems, obesity and diabetes could be helped through valuable spin-off from the new research."

The research project will be carried out by Cambridge University and hospitals in Torbay and Birmingham.

It will be led and managed by the Alström Syndrome UK Support Group, which has built up a nationwide support network for sufferers.

The £344,232 Big Lottery grant will be spent over three years — with more than 90 per cent of the funds being divided between ASUK's partners at Torbay Hospital, Birmingham Children's Hospital and Cambridge University.

It is expected the research will start early in 2010.

Dr Richard Paisey, at Torbay Hospital, said: "We have been privileged to host clinical reviews of adult Alström patients from all over the UK.

"Great credit is due to all the hospital team, including cardiology, biochemistry, audiology, endocrinology, respiratory medicine, radiology and the board of South Devon Healthcare Foundation Trust."

Senior members of the Alström Syndrome UK Support Group will attend a briefing tomorrow for key staff involved in a pioneering clinic at Torbay Hospital.