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 -…
Laboratory Open Day at Manchester Metropolitan University hosted by Professor Tristan McKay and the BDFA: Thursday 30th March 2017 The BDFA would like to thank Professor Tristan McKay and his group at Manchester Metropolitan University (MMU) for hosting a very…
On Friday 28 April 2017 we will mark Undiagnosed Children's Day. Approximately 6,000 children are born in the UK each year with a syndrome without a name – a genetic condition so rare that it is often impossible to diagnose.…
As it is nearly Mother’s Day, we would like to show our support for mothers in the toughest of times. Please help us by sharing a photo of you and your children. You can save the image below and add…
Many of you know Harriet Lunnemann who is the BDFA support and advocacy worker. Not only does Harriet travel the country supporting families on behalf of the BDFA, she also volunteers with families living with disability in Uganda. Now she…
Have a look at the Education Page on our website for more information on the up and coming Education days. Join us and staff from New College Worcester, The Royal Blind School and Linden Lodge in their respective training days to…