A life-saving medicine for children with Batten disease, a rare and fatal genetic disorder, is set to be pulled from the ...

A temporary reprieve for a Vancouver Island family after their terminally-ill daughter will continue to have access to ...

The father of a nine-year-old girl with a rare disease likened to childhood dementia has called for health bosses to prolong access to a "miraculous" treatment. Addy Clarke, from Swindon, was four ...

CLN2 Batten disease is an incurable genetic disorder that causes rapid decline in a child's ability to walk, talk and see. Phoebe, from Coventry, said daughter Flory's doses of Brineura ...

The family of nine-year-old Charleigh Pollock will continue to be covered for the drug, which costs $1 million a year, until ...

Provincial funding of 9-year-old Charleigh Pollock's life-sustaining treatment has been extended by 3 months until the end of ...

Her son, Isaac, eight, had CLN2 Batten disease diagnosed in August 2021. It is an incurable condition which causes childhood dementia, epilepsy and loss of sight. Ms Tilley said: "It is agonising.

The mother of a six-year-old girl with a rare neurodegenerative disease has urged health bosses to "do the right thing" amid fears over the future of the medication she takes. Flory, from Coventry, ...

"She's brave and she never gives up — that inspires me to do it myself," Garland Benson tells PEOPLE of his sister Christiane, who suffers from Batten disease Wendy Grossman Kantor is an award ...