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 ...

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 ...

The family of a nine-year-old girl with a life-limiting illness has launched a mission so she will be able to make special ...

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 ...

B.C. Health Minister Josie Osborne said the decision to stop drug coverage for a girl with a rare, fatal disease was ...

The Ministry of Health has ruled that the funding for the medication to preserve the Island girl's quality of life will be ...

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 ...

The British Columbia government says it will no longer fund an expensive drug for a nine-year-old girl who has a rare and ...

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 ...

The foundation is named for a Minnesota girl, Helen Betty Born, and raises awareness and funds research to find a cure for CLN2 Batten disease, which affects two to four of 100,000 children in the ...