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

A charity walk is to be held to raise funds to help support a Doncaster youngster battling a terminal genetic disease.Five ...

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 ...

"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 ...

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

The two boys will be participating in the 5K along with their cousins, Korry Sharp, 19, and Rachael, 16, who both have Finnish Late Infantile Batten Disease. For the boys, it”s a chance to spend ...

A life-saving medicine for children with Batten disease, a rare and fatal genetic disorder, is set to be pulled from the market because of unresolved pricing negotiations. Otherwise called CLN2 ...

32,404 people played the daily Crossword recently. Can you solve it faster than others?32,404 people played the daily Crossword recently. Can you solve it faster than others?

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.

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