Our Mission
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
Sarah Kenrick takes up position as Head of Support and Advocacy for BDFA
We are delighted to announce that Sarah Kenrick has formally joined the BDFA team as our ‘Head of Support and Advocacy’ from 1st February. Sarah has been providing support and…
Channel 4 News highlight current NICE re-evaluation of Brineura
Last night, Channel 4 News ran an excellent four-minute feature on the current NICE re-evaluation of Brineura, highlighting the impact that the prolonged process is having on our CLN2 Community…
Christmas message and round up from BDFA CEO
Dear all,As we approach the end of 2024, I would like to express our sincere thanks to all the families in our community for their continued support this year. It…
Welcome Philip Walker as our new Trusts and Foundations Fundraising officer
We are thrilled to announce that Philip Walker has joined the BDFA team as our new Trusts and Foundations Fundraising Officer. Philip brings a wealth of expertise and enthusiasm to…
Big Give Christmas Challenge 2024 total announced!
A grand total of £21,660 including Gift Aid has been raised through our Big Give Christmas Challenge 2024!We would like to take a moment to convey our sincere thanks to…
Latest News
Big Give Christmas Challenge 2024 – Now live!
Our Big Give Christmas Challenge campaign page is now open and doubling donations! We are aiming to raise £15,000 to go towards our Family Support Service and New Bereavement Project…
BDFA Christmas cards now on sale!
The BDFA Christmas card packs are now available for purchase in our online shop! This years card design features some of our amazing Batten families. All proceeds go directly towards…
BDFA response to extension of Brineura Managed Access Agreement for the treatment of CLN2
BDFA response to extension of Brineura Managed Access Agreement for the treatment of CLN2 Managed Access Agreement extension for six months The National Institute for Health and Care Excellence (NICE)…
Cambridge Institute of Music Therapy running research project for children with Batten disease
We are thrilled to announce that the Cambridge Institute of Music Therapy will be running a research project for children with Batten disease this year. Funded by the Worshipful Company…
News on the BDFA Charity Incorporation
The Trustees and team are pleased to advise that on 1 September 2024 the Batten Disease Family Association transitioned to a Charitable Incorporated Organisation (CIO) formed under the Charities Act…
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