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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! https://vimeo.com/112004121  

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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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Family Conference 2014

Day 1 of our Family Conference has finished. Seeing the families getting the chance to talk to each other and also to the professionals is exactly the point of the weekend. We have had research updates, family groups, activities for…

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BDFA Newsletter – Issue 29

Our latest Newsletter is available to read and download. Click here to read it.

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Ask The Board

As many of you know our annual family conference will be in Coventry at the RNIB centre on the 8-9th November. We are really looking forward to welcoming so many of you but if you are unable to attend we…

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Evelina London Study

Evelina London are looking to collect information from your child’s medical records as well as the results of any tests that your child may have had, and we may also ask your permission for researchers to use existing samples of…

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Research RFP CLN5 Disease

The BDFA is pleased to announce a RFP for UK researchers for CLN5 disease. Battle Batten on behalf of the BDFA has raised £20,000 and we invite interested researchers to submit an application by 31st October 2014. Download Guidelines and…

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BDFA Family Conference 2014

We are very pleased to invite you to attend the 2014 BDFA Family Networking Weekend and AGM which will be held on: Saturday 8th and Sunday 9th November 2014 from 10.30am – 4.00pm at RNIB Pears Centre, Wheelwright Lane, Ash Green,…

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To make a donation to the BDFA please click the button below which will take you Paypal.

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Text the words BDFA15 £2 / £5 / £10 to 70070

All donations help us to provide the best support we can to families affected by Batten Disease.

Thank you for your support.