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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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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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