News

ONE week to go until your donation could be DOUBLED with the Big Give Christmas Challenge!

25 November, 2025

It's just one week until our Big Give Christmas Challenge

We are seeking an experienced and dynamic Fundraising Officer to join our team

19 November, 2025

We’re looking for an individual who has some experience in

NEW BDFA Merchandise & Christmas Cards – On Sale Now

12 November, 2025

We are pleased to share we have some amazing new

BDFA selected as a recipient of Bank ABC’s 2025 donation programme

5 November, 2025

Thank You to Bank ABC We are delighted to share

Thank you to all who attended the BDFA Family Cooking Session this half term

29 October, 2025

Our BDFA Family Cooking Session was led this time by

Update on NICE Re-evaluation of Brineura- NICE Appeal Hearing, 25 November 2025

6 October, 2025

NICE Appeal Hearing, 25 November The BDFA recently appealed against

BDFA first Family Day 2025 at Temple Newsam

22 September, 2025

On Saturday 13th September, the BDFA hosted our first Family

REMINDER: Expressions of Interest for the 2025-26 BDGRI Grant Round are due on SEPTEMBER 30

5 September, 2025

CALLING ALL RESEARCHERS! Applications are now open for the 2025-26

GB news interview with Jacob Rees-Mogg to discuss the NICE decision not to fund Brineura after 31st December 2025

20 August, 2025

Last night Liz Brownnutt, our CEO was invited onto GB

BDFA awarded National Lottery Community Fund grant to help support services for families affected by Batten disease

19 August, 2025

The BDFA is grateful to The National Lottery Community Fund

BDFA Response to NICE Final Draft Guidance not Recommending Cerliponase Alfa for Treating Neuronal Ceroid Lipofuscinosis Type 2 (CLN2)

14 August, 2025

What does this NICE decision mean? The Batten Disease Family

National Lottery Awards for All Scotland awards grant towards BDFA Family Support Service Scotland

The BDFA are always grateful for the amazing funding bodies