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Batting For Batten Lunch 2016

We are very excited to announce our Charity lunch in the Long room at Lord's: Batting for Batten. The lunch starts at Midday until 4PM, on Wednesday 6th July 2016. Our Patron Sir Andrew Strauss will be in attendance along with other world…

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4 Simple Ways To Raise Money For The BDFA

#1 GIVE AS YOU LIVE Give as you Live is a very simple way to start raising money for the BDFA whilst shopping online at over 4,100 leading stores such as Amazon, Tesco, John Lewis, Boots and more. View all…

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Family Conference 2016 Information

We are pleased to invite you to the 2016 BDFA Family Conference which will be held on: Friday 18th - Sunday 20th November 2016 from 9.30am – 4.00pm at the Holiday Inn Bridgefoot Quay, Warwick Road, Stratford-upon-Avon CV37 6YR There…

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PSDL Laboratory Open Day

Professor Jon Cooper and the BDFA would like to invite you to a Laboratory Open Day on Tuesday 10th May at Kings College, London. The Laboratory will be open to the public between 10:00 AM - 04:00 PM on May 10, 2016. Do…

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Spring Newsletter & Bulletin 2016

Click to download or read the latest BDFA Spring Newsletter & Bulletin BDFA Spring Newsletter BDFA Spring Bulletin

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CLN2 Enzyme Replacement Therapy Trial

After the positive data from their CLN2 Enzyme Replacement Therapy Trial, BioMarin are looking at expanded use. We are working with BioMarin and Great Ormond Street to ensure that eligible patients have access to this. If you know any families…

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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.