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Christmas Break – Dates

We will be closed over christmas from 22nd December - January 5th 2015 Have a wonderful Christmas and New Year.

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Improving The Diagnosis And Understanding Of Batten Disease

A description of the groundbreaking work of Dr Sara Mole and her team at UCL. Work that we have had the opportunity to support through funding. Research at UCL into the genetics of Batten Disease has had a global impact…

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Together For Short Lives – Animation

A powerful animation created for Together for Short Lives by video marketing agency Hurricane Media is released today. The short film, We’re having a baby was produced pro bono for the UK children’s palliative care charity, using real life stories…

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This Morning Appearence

Recently the Harrison family appeared on ITV 1's This Morning as part of the Text Santa appeal. One of the charities supported is Together for Short Lives. As well as raising much needed awareness for them, it was also great to…

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BDFA Annual Report 2014

Read the Annual Report 2014 here The Batten Disease Family Association is the only UK Charity committed to supporting families, raising awareness and funding research into the devastating set of neurodegenerative diseases commonly known as Batten disease. The BDFA was…

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Job Opportunity – Clinical Nurse Specialist In Battens Disease

We are delighted to announce that thanks to every one of you who has run through mud, swam Scottish Lochs, cycled the length of the country, drunk coffee, walked, ate cake, had hair cuts and everything else in between to…

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Family Conference 2014 Video

After the success that was our Family Weekend, we have the video highlights ready for you to see! Please watch and share!  

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Kidz Up North – November 20th

Thursday, 20th November 2014 – 9.30am – 4.30pm EventCity, Barton Dock Road, Manchester, M17 8AS, (Near the Trafford Centre) More Info here Free entry, free parking, fully accessible! The show guide for this event is now attached. · Do you know…

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We Need Your Feedback

After the amazing Family Conference weekend, we would love it if you could send us your feedback. Below is a very brief feedback form to fill in. You can download it, complete it and post it back to us. Lucy…

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An Amazing Weekend

The BDFA Family Conference is over for another year. Lots of families, children and professionals attended. Once we have had chance to re group, we shall have a full review of the weekend. You can see more pictures on our Facebook…

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