The Australian Chapter of BDSRA
“We are pleased about the progress that BioMarin is making in developing a treatment for CLN2 disorder,” said Margie Frazier, Ph.D., Executive Director, Batten Disease Support and Research Association. “This... Read More
Lisa and Brett Archer of NZ say the breakthrough in research into Batten Disease is too late for this six-year-old daughter Katie, but they welcome the chance for scientists to move on to human trials........ Read More
The Batten Disease Association is an organisation dedicated to improving the well-being of patients and families suffering from Batten disease, a severe and progressive inherited neurological disorder that primarily affects children and young persons.  It is one of a group of about 50 disorders collectively known as lysosomal storage disorders.  Batten disease primarily affects brain function, leading to the loss of learned skills such as walking, talking and feeding, behavioral problems such... Read More
Batten disease (Neuronal Ceroid Lipofuscinoses) is an inherited disorder of the nervous system that usually manifests itself in childhood. Batten disease is named after the British paediatrician who first described it in 1903. It is one of a group of disorders called neuronal ceroid lipofuscinoses (or NCLs).  Although Batten disease is the juvenile form of NCL, most doctors use the same term to describe all forms of NCL. Early symptoms of Batten disease (or NCL) usually appear in childhood when... Read More