The BDFA is proud to be part of the 'Dementia Strikes Children Too' collaboration with Niemann-Pick UK and the MPS Society, and BioMarin Europe Ltd. The collaboration has launched a new video about childhood dementia. Please be warned that this…
BDFA Announces Departure of CEO Sam Barber We are very sorry to announce that our CEO Sam Barber will leave the BDFA at the end of June as her first year's contract ends. During her time with us, Sam has…
What is cerliponase alfa? Cerliponase Alfa, which is marketed as Brineura, is the first disease-modifying treatment for any type of Batten disease. Children with CLN2 Batten disease have a genetic mutation which prevents them from producing enough of an enzyme…
We are a proud member of the Disabled Children’s Partnership – a growing coalition of more than 60 organisations – campaigning for improved health and social care for disabled children, young people and their families in England. We know that…
NICE say NO to the use of Cerliponase Alfa for children with CLN2 (Late Infantile Batten disease) BDFA Summary of NICE Decision NICE ECD Report SIGN THE PETITION HERE This decision means that children diagnosed with this devastating disease in…
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…
After our amazing Family Conference last weekend. We have posted the photos taken over the weekend on out facebook page for you to see and share! We will have our video up very soon!
Well done to our intrepid team of Ben Nevis conquerors! Apparently it was a lot more difficult than anticipated, so why not support them by donating to the BDFA HERE
Easter is a very exciting holiday, especially for children because it involves lots of chocolate and one of the fluffiest and loveliest animals: the bunny. This year Easter is celebrated on March 27, right at the beginning of Spring. With…
Jenny Shackleton ran the WOLF Run to raise money for the BDFA. Although really cold, she did an amazing job and completed the course! Have a watch of the video! https://www.youtube.com/watch?v=NCA-xqUoBPw&feature=youtube_gdata&app=desktop