People living with rare diseases in the north-east are being given a lifeline with the launch of its first community group dedicated to the cause.
It is being spearheaded by a charity campaigner following concerns that sufferers in the region are being left without support.
To be held for the first time in April, it is hoped the Revolutionaries Community Programme will offer people the chance to meet others in a similar position and find out more information about their illnesses.
It has been organised by 42-year-old Rebecca Stewart, who lives in Cushnie, near Tarland.
She launched the charity Teddington Trust with her sister Nicola Miller in 2012, following her nephew’s diagnosis with the rare genetic condition xeroderma pigmentosum (XP).
At just 13 months old Eddison Miller became one of the youngest people in the world to have the disorder, which means he could get cancer from the UV rays in sunlight, and has to wear a special suit to block him from them when he leaves the house.
Mrs Stewart said: “One in 17 Scots, or around 300,000 people, are living with a rare disease.
“While the medical issues they have are not similar, many do face similar issues when they have a rare disease – such as with access to education or other services – so there’s a lot of peer support to be gained from cross-condition platforms.
“That was where the idea for having a local community group came from.”
Mrs Stewart has also been lobbying health boards to see if more can be done to help those in need.
She added: “It really highlighted to us the lack of support services in this area and we are working with NHS Grampian to see if we can facilitate a more obvious signposting route for patients with rare diseases.
“When they are diagnosed at a clinic they aren’t forwarded to any charitable groups which can help them, so they are left to find them on their own.
“There’s no obvious path to look for help.”
The first meeting of the group will be held at the Prime Four Village Hotel on Friday, April 27 from 10.30am.
