General: 07354 486 586   |   Fundraising: 07511 821 181   |   Support: 0800 046 9832  
Welcome To Sarah, BDFA New Fundraising Assistant

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…

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28 February 2023 Is #RareDiseaseDay

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…

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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)…

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UK Challenge 2023- Fantastic Opportunity For Corporate And Other Teams To Join The World’s Largest Team Building Event To Raise Funds For The BDFA

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,…

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BDFA Family Conference 2023 News, Family Tickets Available Now!

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…

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BDFA Win Award From The Big Give Christmas Challenge 2022

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…

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28th June – International Neonatal Screening Day

Today is #InternationalNeonatalScreeningDay and the BDFA are proud to be members of the UK NBS Collaborative working towards meaningful change and extension to the UK newborn bloodspot programme. #INSD2022 Launched last year, the aim of this day is to raise…

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Registration For The BDSRA USA Annual Family Conference Open!

We are pleased to be able to offer families in our Batten community the chance to virtually attend the BDSRA family conference again this year. The last 2 years have been brilliant events and the BDSRA work so hard to…

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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, at…

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Join Our Team! The BDFA Are Looking For A Scientific Officer

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…

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