General: 07876 682589    |   Fundraising: 07745 210212   |   Support: 0800 046 9832  
Rare Disease Day 28th Feb 2022

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…

Read More
The BDFA Welcomes Sarah Kenrick To The Team As Our Batten Behaviour, Adults And Transitions Specialist.

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…

Read More
BDFA Family Conference 2022 Tickets Available Now

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…

Read More
CLN5 Update- Neurogene NGN-101 Now Enrolling Participants At Clinical Trial Site In University Of Rochester Medical Center In Rochester, NY, USA

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…

Read More
Taysha Gene Therapies Invites CLN1 Community Feedback

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…

Read More
BDFA STAFF NEWS, A Warm Welcome To Elizabeth Jones

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…

Read More

Make a donation:

To make a donation to the BDFA please click the button below which will take you Paypal.

All donations help us to provide the best support we can to families affected by Batten Disease.

Please do leave us a note about the donation or fundraising so we know what you have been

doing to support us and who to thank.

Thank you for your support.