The BDFA’s mission is to enable everyone who is affected by Batten disease to live life to the full and secure the care and support they need until we find a cure.
The BDFA offers informed guidance and supports families and professionals who work with them as well as actively increasing awareness of the disease and funding future research to identify potential therapies and ultimately a range of cures.
The BDFA works across the rare disease sector to influence change in policy and processes as a collective voice.
Latest News
BDFA Christmas charity single made it all the way to the no 1!
Well the Christmas charity single made it all the way to the no 1 position in the official UK physical singles charts!! Huge congratulations and thanks to our friend and…
BDFA December 2021 newsletter is here!
Welcome to the BDFA newsletter December edition. The team has been working really hard to get the newsletters going again after a long break. We hope you enjoy the update.…
Important milestone CLN1 disease clinical trial funded by Taysha Gene Therapies
Taysha Gene Therapies has announced an important milestone for the Queen’s University clinical trial for TSHA-118, a CLN1 disease clinical trial funded by Taysha Gene Therapies. Please read the community…
Boris the BDFA bear has some big news!
Boris the BDFA bear has some big news! He is off on his long awaited UK tour! Like the rest of us, Boris had his holiday plans cancelled last year…
Disability Benefits Session with disability benefits expert Lizzie MBE
Wednesday 15th December, 10.30-12.30- via zoom As part of our ongoing partnership with Rett UK and Demelza This is a session for families who may have a new diagnosis and…
Latest News
PRIDE OF BATTEN WINNERS
It's the first year of these very special BDFA awards, celebrating best practice across the UK among people supporting and working with our children, young people and adults with Batten…
BDFA Christmas charity single 2021, pre order now!
We are so excited!! The Christmas Charity single in aid of the BDFA is released on Friday 3rd December and you can order a copy on limited edition CD now!…
Can you help the BDFA to win a £1,000 Ecclesiastical Movement for Good Award?
Starting on the 6th December Ecclesiastical will be giving away ten £1,000 grants each day for twelve days, to charities that have the most nominations! This award would mean a…
BDFA Birthday event Saturday 20th November 2021- join us to celebrate!
Happy Birthday BDFA!2021 marks the 20th anniversary of the BDFA becoming a registered charity! So to celebrate this mile stone for the BDFA, we are having a party!Sadly we would…
NCL 2021 Edition Conference debrief and summary and ask an expert- sign up now
UK zoom session with Professors Jon Cooper (Washington University) and Sara Mole (UCL) Come and find out all about the presentations at the NCL 2021 conference (held recently in St…
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