Take on a challenge for the BDFA! 30 April, 2026 Inspired by the TCS London Marathon last weekend? Do you Find out more
An Introduction to Childhood Dementia Webinar 29 April, 2026 To Parents and our colleagues in Health, Education and Social Find out more
BDFA CEO Liz Brownnutt outlines the devastating impact of the NICE decision on Brineura access for children with CLN2 Batten disease in interview with RARE Revolution magazine 13 April, 2026 As we continue to advocate for access to Brineura for Find out more
Support the Future for Rare Campaign Survey 10 April, 2026 The Future for Rare survey is designed to capture a Find out more
BioXconomy Article about CLN3 1 April, 2026 In November 2025, the BDFA was approached by BioXconomy, an Find out more
26.2 Miles for the BDFA – Sean’s London Marathon Journey 27 March, 2026 This April, West Midlands dad Sean Wheatley will take on Find out more
Welcome our Fundraising Officer to the team, Hannah 2 March, 2026 We’re delighted to welcome Hannah to the team as our Find out more
Rare Disease Day 2026! 28 February, 2026 Today, we stand together for Rare Disease Day! 🌟 Let's Find out more
Could you be fabulous fundraisier?? 27 February, 2026 🌟 We want to hear from you! 🌟 As we Find out more
Childhood Dementia Scotland action group update 23 February, 2026 Huge thanks to Donna Brown, bereaved parent of Reece (forever Find out more
IMPORTANT UPDATE, BDFA STATEMENT ON NICE FINAL DECISION TO REJECT BRINEURA FOR NEWLY DIAGNOSED CHILDREN WITH CLN2 BATTEN DISEASE 18 February, 2026 BDFA statement on NICE decision to reject Brineura for children Find out more
News from THX Pharma (formally Theranexus) announce partnership with Biocodex 13 February, 2026 Yesterday we received news from THX Pharma (formally Theranexus) who Find out more
