Launching later this week the BDFA will have special Easter hunt buckets available to buy from our online shop, filled to the brim with delicious chocolates, including some specially wrapped in BDFA colours and our logo. Our wonderful supporters, Beefy's…
We are pleased to announce the appointment of Sarah Chandler to the role of Fundraising Assistant at the BDFA. Sarah lives in Manchester and she will be working full-time at the BDFA to assist with various aspects of the fundraising…
Rare Disease Day is the global movement dedicated to raising awareness and generating change for the 300 million people living with a rare disease worldwide like Batten Disease Since 2008, the global rare disease community has come together on Rare…
Thursday 23rd March. 8pm The Dads Chat group is a chance to meet with other dads of children with Batten disease. It’s led by one of our trained parent Peer Befrienders Andrew Dawkins and James Yarrow (both amazing Batten parents)…
The BDFA is very privileged to be one of four charities supported by Beefy’s Charity Foundation, Lord Ian Botham’s family-led foundation. We are delighted to be working with Beefy’s , also the three other supported charities, Yorkshire Brain Tumour Charity,…
BDFA Family Conference 2023 NewsFamily Tickets available now! The BDFA are excited to be holding our Family conference again in October 2023. We have made some changes to the plan for this year, which we hope, will make the weekend…
We are delighted to announce that the BDFA has won a Big Give Award for our Big Give Christmas Challenge Campaign 2022! The BDFA won the award for demonstrating key learnings from our campaign. We raised 70% over our target…
We believe it's important to work together with our global patient advocacy partners to share important research updates in a unified, timely, and factual manner. Our network of organizations has worked together on this statement to share with our families…
The BDFA held its first Peer befriending retreat this past weekend in Surrey, gathering together some of our wonderful peer befriending volunteers for some training and connection time as a team. We have also just started our second Peer Befriending…
The BDFA is very pleased to announce that Dr Joanna Nightingale, our part-time Scientific Officer, will take up a new expanded role from April. Joanna will take up the role of Head of Scientific Affairs, a full-time post which will…