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BPSU – Rare Disease Conference 2016

Join Royal College of Pediatrics and Child Health for the BPSU's 30th anniversary Rare Diseases Conference, taking place on 23rd February 2016 at the University of Birmingham. The conference will bring together paediatricians, trainees and other healthcare workers with an…

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Aldemore – BDFA Charity Of The Year!

ALDERMORE ANNOUNCES THE BATTEN DISEASE FAMILY ASSOCIATION AS ITS CHARITY OF THE YEAR  Aldermore employees have chosen the Batten Disease Family Association (BDFA) as their charity of the year for 2016. The Bank’s employees aim to raise £15,000 for the…

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UCL School Of Pharmacy Study

UCL School of Pharmacy is carrying out a study to investigate the views of parents and carers about administering medicines to children via the rectal route. The survey will ask some demographic and background information before presenting three scenarios, where…

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Sophia Awarded Her PhD Today

Congratulations to Sophia who has been awarded the degree of PhD today. This a fantastic achievement and one we can all take great pride in as all your efforts funded her studies.  This is an important career step for Sophia and rewards…

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Run 10K For The BDFA

Is your New Year's resolution to get fit and have fun? And to raise money for the BDFA whilst doing it? Then sign up for the Vitality British London 10K, staged through the heart of central London passing many of…

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Jenny Shackleton’s Extreme Fundraising

Starting from 2015, Jennifer Shackleton has been on Obstacle Course Racings to raise money and awareness for BDFA and Batten Disease. Her latest run was in Coventry, last weekend, on 9th of January. Thank you, Jennifer for all your hard…

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Points Of Light Award From The Prime Minister – Duncan & Rod

We are delighted to announce that Duncan Brownnutt and Rod Wark have been awarded the UK Prime Minister's award of the Points of Light. The award recognises those outstanding volunteers who make a change and Duncan and Rod have certainly…

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We Collect STAMPS!

Support the Batten Disease Family Association (BDFA) to raise vital funds by sending your used stamps to us. How it works: Simply send us your stamps and we will do the rest! We then send the stamps off to be…

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Ben Nevis 2016 – Fundraising Challenge

We are delighted to announce our fabulous fundraising event - Climb Ben Nevis Ben Nevis (Gaelic translation “Mountain of Heaven”) is the highest point in Scotland and the British Isles, standing at a height of 1343m (roughly 4000ft).  Fort William, on…

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Possibility Of A One-and-done Treatment For This Form Of Batten Disease

Breaking news for Batten Disease "Our study opens up the possibility of a one-and-done treatment for this form of Batten disease," said Beverly Davidson, Ph.D., director of the Raymond G. Perelman Center for Cellular and Molecular Therapeutics at Children's Hospital…

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