Parents of children with a rare neurodegenerative disease say they are in disbelief they could within months lose access to the only approved treatment that slows the condition's progress. CLN2 Batten ...

Batten disease is a rare genetic disorder affecting 3 in 100,000 babies in the U.S., causing neurodegeneration, seizures, blindness, and early death, with an average life expectancy of 10-12 years.

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 ...

A Derbyshire family are facing an agonising wait to find out whether treatment for a rare genetic disease will still be ...

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.

Nine-year-old Charleigh Pollock was diagnosed with a neurological disorder known as Batten disease, or CLN2, in 2019. She developed seizures and mobility loss and began to decline rapidly ...