There is still time to donate for Batten disease awareness day! 9 June, 2024 A HUGE THANK YOU to everyone who has donated so Find out more
IT’S INTERNATIONAL BATTEN DISEASE AWARENESS DAY 2024 9 June, 2024 We are looking forward to celebrating the incredible families in Find out more
1 Day to go till International Batten Disease Awareness day 2024! 8 June, 2024 It has been amazing to see all the support for Find out more
Text to Donate for Batten Disease Awareness Day 2024 8 June, 2024 Here is Lisa, our Team Admin Officer, raising awareness in Find out more
BDFA Peer Befriending Team training weekend 25 April, 2024 BDFA Peer Befriending Team had a weekend away together in Find out more
UPDATE FROM THERANEXUS AND BEYOND BATTEN 24 April, 2024 Dear Families, Theranexus and their partner Beyond Batten Disease Foundation Find out more
We’re supporting Newlife Charity's new report, Fight For Our Future 24 April, 2024 As part of our work with Disabled Children's Partnership we Find out more
Help support Short Lives Cant Wait by signing the letter to the Prime Minister 22 March, 2024 Together for Short Lives has launched their ‘Short Lives can’t Find out more
Invite your MP to Child Trust Fund Westminster Hall debate, important debate in Parliament next Tuesday 19 March at 4.30pm 14 March, 2024 Update from Disabled Children’s Partnership The amazing parent campaigner Andrew Find out more
Joint Statement to the Global Batten Disease Community regarding update on Lexeo’s CLN2 disease gene therapy program 14 March, 2024 Dear Batten community, Over the past few years, Lexeo Therapeutics Find out more
Next quarterly Town Hall Meeting 6 March, 2024 Dear Families, The BDFA Team and Trustees would like to Find out more
Today, we stand together for Rare Disease Day! 29th February 2024 29 February, 2024 Let's raise awareness and support for those living with rare Find out more
