The BDFA is pleased to announce that we are partnering with our global counterpart organisations to offer in-kind support of a Batten Disease Global Research Initiative.At their recent Annual Family Conference in St Louis, the BDSRA announced the formation of…
Dear CLN3 families, As you know we are in regular contact with the groups involved in the Miglustat trial. Today we received this communication from Theranexus: “We do continue to work on the Phase 3 Study, as you may have…
Would you like to train to become a BDFA Peer Befriender and help support another parent of a child with Batten disease on their journey? We are looking for Dads from our BDFA Community to train to become Peer Befrienders…
04/07/2024 Dear Families, Following the Nice Committee meeting on 12th June for the re-evaluation of Brineura, we wanted to make you aware that NICE have decided to pause the formal evaluation process while they assess new evidence from BioMarin. NICE…
Dear Families, The LSD Collaborative is a group of 11 charities supporting lysosomal disorders. They have prepared a survey for families, individuals and carers of the LSD Community living in the UK. It is designed to help them understand the…
Dear Families,The BDFA Team and Trustees would like to invite you to our next quarterly Town Hall Meeting at 7pm on Thursday 4th July 2024.The purpose of the meeting is to provide families with an update from the team and…
The CLN group meetings have been running for 6 months now and it has been fantastic to see so many of you join us for these regular events. The next 6 months meetings have now been scheduled and you can…
Lynsey Dent, one of our BDFA Peer Befrienders, speaks on this podcast about what it’s like to be a bereaved parent, after she lost her children Ellie Mae and Caleb to Batten disease. She also speaks about how our BDFA…
A HUGE THANK YOU to everyone who has donated so far, we have had an incredible response to the Text to donate campaign. Text the word BATTEN to 70085 to donate £10 to the vital work of the BDFA to…
How CLN2 Batten disease changed our life: “A Mother’s Love” My name is Gail Rich and our two daughters were both diagnosed with CLN2 Batten disease in late 2016. We also have a son, Louis, who is 13 years old.…