Coverage of an expensive drug for a nine-year-old Langford girl with a rare fatal condition is being discontinued, B.C.’s ...

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 ...

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

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 ...

The B.C. government said Wednesday it will be pulling funding for an extremely expensive drug used by one person in the ...

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

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 ...

Seven-year-old Lena and Nina will eventually become blind and bedridden before their lives are sadly lost to the cruel ...

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 ...

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 ...

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 ...