A group of residents, old and young, living with a rare and incurable genetic disorder have organised their first fundraising event to help assist research into their condition.

Emily Hiller, 24, from Abbots Langley, was diagnosed with Ehlers-Danlos Syndrome (EDS) in January this year and has since been active in raising awareness of the condition amongst people in the area.

In June, she helped form a support group to enable others with EDS to share their experiences.

EDS is when the structure of connective tissue in the body is abnormal due to a gene mutation, resulting in abnormally fragile and hypertensive tissues throughout the body which can lead to a range of multi-systemic symptoms ranging from chronic fatigue to resistance to local anaesthetics.

Since setting-up, the group has already received a positive response.

Miss Hiller said: "We have been contacted by a Beavers group to talk to the children about EDS as a few boys have the condition there.

"On social media I’ve been contacted by a few people who have EDS who want to join and lots of people have donated items for our charity event."

The event, a pamper and craft day, which will be taking place at Adeyfield Community Centre in Hemel Hempstead on September 12 and all proceeds will go to EDS UK to help research and teach doctors about the condition to diagnose people with the condition.

Miss Hiller added: "Often doctors are unaware of the illness and diagnose incorrectly.

"The event will be a mixture of stalls such as homemade items - jewellery, cards and scarfs - and we will be having a raffle and tombola with prizes such as Gambados Children’s Play Centre.

"For the children there will be biscuit decorating and a lucky dip.

"The event is coming together very smoothly and all the member are helping out with ideas, donating items and volunteering to help out.

"In our first support meeting there were not many people at all. About seven people turned up. But at our last meeting we had 11, which was great progress.

"It’s nice to meet other people who have the same condition who you can talk to and they understand what you are going through."

At the event, Miss Hiller will be providing details on the support group for anyone who thinks they have EDS.

She added: "I hope to make people locally aware of the condition and what symptoms to look out for.

"The condition is invisible which is why it’s important to get that message out to people."