The father of a nine-year-old girl with a rare disease likened to childhood dementia has called for health bosses to prolong ...
Dozens of campaigners were in Westminster on Wednesday after being told NHS access to the drug was set to end in May. Health ...
A mother has spoken about her "painful" experience over the potential end to her son's life-enhancing treatment for a rare ...
Jessica Rich, nine, has a very rare and serious illness called Batten disease, but her life-saving drug could be about to be ...
A local family is battling a rare disease diagnosis. The American pro wasn't a Swiftie when they met, but he sure is now. The Oscar-winning actor and his wife of over 30 years were reportedly found ...
Oliver and Amelia Carroll have Batten Disease - an incurable genetic disorder that causes rapid decline in a child's ability to walk, talk and see. | ITV News Granada ...
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 ...
NGNE to update on a potential registrational phase 3 study, using NGN-401, for the treatment of patients with Rett Syndrome.
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 ...
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.