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A New Challenge For Professor Jonathan Cooper

Long-time Batten disease researcher and BDFA Scientific Advisor Professor Jonathan Cooper is leaving King’s College London this summer to take up a new post at the Harbor UCLA Medical Center in Los Angeles. As in London, Jon will continue to…

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How It Feels To Know You Will Outlive Your Child

There are few things more tragic than the sudden death of a child, an event that can leave parents bereft, heartbroken and railing at the unnatural order of things.

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Ben Nevis Climb Complete!

Well done to our intrepid team of Ben Nevis conquerors! Apparently it was a lot more difficult than anticipated, so why not support them by donating to the BDFA HERE

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A Successful Education Training Day

Our Education Training Day at Linden Lodge last Friday was a great success. It was great to be able to bring professionals together to network and to learn more about Batten disease. We packed a lot into a short space…

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Awareness Day – 3rd June 2016

On the 3rd June, we would like to mark Batten Disease Awareness Day and we would love for you to help us turn the world orange! Without awareness our job of securing vital services for families and essential research into…

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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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