A COUPLE who help others affected by the rare genetic disorder their daughter suffers from have been recognised for their work by the prime minister.

Paul and Tracy Lynch, from Worthing, founded the charity and support group Wolfram Syndrome UK after their daughter, Jennifer, was diagnosed with the condition when she was eight.

They have now been awarded a Points of Light award from Prime Minister David Cameron, which recognises exceptional volunteers.

The couple said they were "thrilled" with the award, adding their charity had "come a long way" since they founded it in 2010, just six weeks after their daughter was diagnosed.

The currently incurable condition affects one in 500,000 children and most commonly causes diabetes and blindness, but can also cause deafness and neurological problems.

Among the charity's work is funding research into a drug that is hoped will slow down and eventually halt the syndrome’s progression.

Mr and Mrs Lynch said: "We have met many remarkable families and individuals, many who are now good friends, who also volunteer their time to help with fundraising and raising awareness for this rare condition.

"To know that we are helping others with our group as well as our daughter is a great feeling and knowing that what we are doing is appreciated by those we meet and work with is very humbling."

Mr Cameron said the couple had taken "phenomenal steps to raise awareness and find a cure for Wolfram Syndrome."

He added: "Their work is having an impact in the medical community and has the potential to transform the lives of those living with this rare condition.

"I’m pleased to name Paul and Tracy the 555th and 556th UK Points of Light.”

The couple also earned praise from their MP Sir Peter Bottomley.

He said: “Paul and Tracy have built a charity in Worthing that is supporting people across the country living with this rare condition.

"I’m delighted that their achievements are being recognised by the Prime Minister with this Point of Light award.”

Mr and Mrs Lynch also thanked their team at WSUK, adding: "Special thanks to Alan Nye, Darren Lynch and Michael Chandler for their endless help and time they dedicate to this charity."