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 ...

CLN2 Batten disease, external 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 ...

Two years ago, Beatrice Cieslik was diagnosed with CLN2 type Batten disease - a rare degenerative condition which causes seizures, blindness, dementia, and difficulty with mobility and speech.