We have adapted the day of Peer Befriending training to Tuesdays to suit parent availability. We have a few spaces left and would love to hear from you if you would like to become a Peer Befriender for the BDFA.…
The BDFA are proud to launch a new Peer Befriending service to help support families in a way that only other parents of children with Batten Disease will be able to do. We’re so excited to be now seeking our…
BDFA STAFF NEWS The BDFA is delighted to introduce Mimi Petty as our new Peer Befriending Coordinator. Mimi is a bereaved parent and her son Bertie passed away in 2019 from CLN1 Batten disease. Mimi is already well known to…
Join the Global Chain of Lights! Here is how.... Show your support for #RareDiseaseDay by lighting up your home, office or school on 28 February! By coming together to #LightUpForRare we can raise awareness, show solidarity, and be part of…
Sarah is a Registered Nurse for people with Learning disabilities and has worked in the health and social care sector for over 40 years, 20 of which were as Registered Manager for SeeAbility’s Heather House in Hampshire providing specialist long…
The BDFA are so excited to be able to bring this event to you all again after a few years break, it will be so good to get together in person.You will have noticed the change in date for the…
Neurogene Inc., a biotech company committed to developing life-changing genetic medicines for patients and theirfamilies affected by rare neurological disorders, is excited to share an important update on their development programfor CLN5, a subtype of Neuronal Ceroid Lipofuscinosis (NCL), or…
Taysha Gene Therapies is planning a webinar and invites the CLN1 disease community to submit questions about the TSHA-118 CLN1 Batten disease clinical trial to the patient advocacy groups BDSRA and BDFA. Please submit your questions by February 20th, 2022 to Lisa at, admin@bdfa-uk.org.uk at…
BDFA STAFF NEWS A big welcome to Liz Jones to the BDFA family support team! Liz is a qualified Child & Family practitioner working with families for over 16 years in both voluntary and public sector. Liz has spent most…
Fancy working for the BDFA? The BDFA currently have an exciting job opening for a Scientific Officer to join the team. This is an opportunity for to join a national rare disease charity as our in house scientific ‘expert’ on…