Jeans for Genes: helping children with genetic disorders

Raised in 2007

£2,620,390

"Rhian is a God-send!"

Rhian Lant is a nurse who specialises in chronic granulomatous disorder (CGD), a condition which leaves children unable to fight off bacterial and fungal infections.  The CGD Research Trust was able to create her position with funding from Jeans for Genes.

Rhian, CGD's clinical nurse specialist Rhian, CGD clinical nurse specialist

Rhian is vital to families because CGD is very rare and doctors don’t always know much about it.

She's based at Great Ormond Street Hospital in London but she also visits families across the UK, liaises with schools and runs specialist clinics.

Janice Wright is mum and grandmother to children with CGD.  “Rhian is a Godsend” she says, “it’s brilliant to have her to turn to.”

Rhian has now been joined by Marie Kirwan.  Based at Wythenshawe Hospital in south Manchester, Marie focuses on the needs of adults with CGD, allowing Rhian to concentrate on children.

This year, the CGD Research Trust will be able to offer a new psychological support service.  It’s being developed by Dr Nigel North, a consultant clinical psychologist at Salisbury Hospital in Wiltshire.  The helpline will offer emotional advice and support to anyone in the UK affected by CGD.

With your help, Dr North will be able to expand the service to offer clinic appointments and to visit people at home.

It’s your donations that fund Rhian, Marie and Nigel’s positions.  Help us to allow them to carry on giving valuable support to families by registering for a fundraising pack or making a donation.