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Make Your Voice Heard: Take The New Rare Barometer Survey And Share Your Opinion On Newborn Screening For Rare Diseases!

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…

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Email Issues

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…

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Conference Update

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…

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Message From The CEO

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…

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Children’s Hospice Grant Campaign, News From Together For Short Lives

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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Really Encouraging News Of Preliminary 6-month Results In The Phase I/II Trial Of Batten-1 In Batten Disease (CLN3)


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BDFA Staff News-Head Of Family Support, Sian Fisher Leaving In June

Dear All, I am saddened to announce that Sian Fisher, our wonderful Head of Family Support and Advocacy, is leaving the BDFA in early June. Sian is moving to Winston’s Wish, the UK’s childhood bereavement charity, as a bereavement support worker. Sian explains…

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Egg-citing BDFA News For Easter

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…

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CLN7 Research Program Update- Statement From Global Batten Disease Organisations

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…

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Dr Joanna Nightingale, BDFA Scientific Officer In New Role Of Head Of Scientific Affairs

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…

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