资讯

Batten disease is a rare group of nervous system disorders called neuronal ceroid lipofuscinosis (NCLs) (or ceroid lipofuscinosis, neuronal: CLN) that get worse over time. It usually starts in ...
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 ...
Oscar Jealous died aged just 10 from the little-known Batten Disease. But what is the illness and what are its symptoms? Oscar's family have described it as "the most horrific disease known".
Despite "fuzzy vision," Isla didn't appear to have any other symptoms but was later diagnosed with Batten disease, a rare genetic condition that causes dementia during childhood, delayed ...
Researchers find that an easy-to-measure brain process may be a target or biomarker in measuring treatment outcomes in clinical trials in Batten disease. Early symptoms can be subtle. A child's ...
Producer Gordon Gray's daughter Charlotte has recently died after battling with Batten disease (Image via Miguel Ángel Hernández/Unsplash) Well-known television producers Gordon Gray and Kristen ...
NHS access to the drug, which costs over £500,000 per patient per year, had been due to expire at the end of May, however an ...
Emma Austin needs expensive therapy every two weeks to slow the progression of Batten disease, which has "no known survivors" Courtesy Kirstie Austin Emma Austin, 7, has the fatal Batten disease ...
June 9th is International Batten Disease Awareness Day. It's an opportunity for those dealing with this horrific, ultrarare condition to share stories, spread awareness, and maybe spur on much ...
In one case study, it was found that weekly music therapy sessions helped one ten-year-old child with Batten disease better express her feelings and memories through writing and singing songs. Not ...