Help us produce the insurance information you need! Accessing appropriate insurance can be a significant problem for many patients and families affected by genetic conditions. Patients and families affected by genetic conditions often find it difficult or impossible to access…
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…
Please join us on Thursday 8th June (11.00 – 16.00) at the RVC, London, to find out more about the work of Dr Russell’s laboratory, including their work as part of the BATCure research project. Dr Russell has great expertise…
The BDFA is delighted to announce that in the last week we have received very positive news from the European Medicines Agency (EMA) and the U.S Food and Drug Administration (FDA) on the approval of Brineura as the first treatment…
Ahead of the General Election, Together for Short Lives have produced a paper for you to share with your local MPs highlighting the needs of children and families living with the impact of a life limiting conditions in the UK.…
Words from Ollie's Army Battling Against Battens We have the most incredible news to share with you all! Last night our little boy met his hero. Through the power of social media Ollie's story reached Ed Sherran. Ed and his team were…
Our latest editions of our Spring Newsletter and Bulletin are available to read or download. Download below Spring Newsletter Spring Bulletin BATcure Newsletter
These are the Conference documents that have been sent to those attending. If you require them again please see below. Conference Outline Kids Conference Outline Confirmation Letter There is now LIMITED Booking available for BDFA Family Conference 2017 -…