Despite the hopeful news of a European licence for Brineura - the new and only treatment for children diagnosed with CLN2 (Late Infantile Batten disease) - NHS England has now denied access to this only hope for children and families…
On a beautiful June evening we were lucky enough to host our very first Starlight Ball. It happened to be held on awareness day. We were thrilled to see so many people support the BDFA and also have a fantastic time…
On the 9th June, we would like to mark Batten Disease Awareness Day and we would love for you to help us turn the world orange! Without awareness our job of securing vital services for families and essential research into potential…