The Batten Disease Family Association will be holding our AGM on Saturday 26th August at 10.30am via zoom. We hope as many of our community as possible will be able to join us. More details to follow.
Dear BDFA Families, There is a Rare Barometer survey on your opinion on newborn screening for rare diseases which closes very soon! It should take no more than 20 minutes to complete and closes on July 9, 2023. We recognise…
We have been made aware that some of our emails this week have not been getting through to you. We are working with our email provider to see if there is an issue and to sort this ASAP. If you…
Dear All, It is with regret that we inform you that we have made a difficult decision to cancel the BDFA family conference later this year. We do not have the logistical capabilities to organise such a large event at…
I have taken the difficult decision to step down from my role as CEO at the BDFA. I wanted to take the opportunity to thank the dedicated staff team and all of the incredible professionals, organisational partners, colleagues and trustees…
Dear Families, Many families in the Batten community rely on their local children's hospice for essential support that mainstream NHS services are already struggling to provide. The news from Together for Short Lives regarding the ending of NHS England grants…
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Dear Families, It is with sadness that we are writing to announce that our dedicated colleague Sian Fisher left her role as the Head of family support at the BDFA. Sian’s last day was on Friday last week. We are…
For Awareness day this year, Alison wanted to share her poem about her son Joshua. Smile Last night I watched you sleeping and I wondered what you saw. Do you dream in colour? Are you running? Singing your favourite songs?…
Aimee is mum of Issac who has CLN2, she tells us about the daily fight against Batten disease. 🧡 Together we WILL make a difference 🧡 #battenday2023#showusyourorange#battenawareness#bdfa#battendisease@bdsra @bdfabattendisease