General: 07876 682589    |   Fundraising: 07745 210212   |   Support: 0800 046 9832  
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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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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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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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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Beefy’s Charity Foundation

Batten disease is the most common inherited neurodegenerative disease of children and young adults in the UK.   It develops in a healthy child, and causes progressive deterioration and loss of vision as well as epilepsy and a gradual decline…

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BioMarin BMN190 Trial

BioMarin would like to announce that Great  Ormond Street Hospital (GOSH) in London will be joining the European clinical study centres participating in the BioMarin BMN190 trial in the immediate future.  At the time when GOSH initiates the study, the…

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Neurological Alliance

Batten Disease Family Association welcomes Neurological Alliance’s five calls to action for prioritising neurological services The Neurological Alliance has today launched a new report, Going the distance: National calls to action to drive neurological service improvement in England, taking a…

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Improving Rare Disease Education

Improving Rare Disease Education and Training for UK Nurses: hugely important initiative to ensure earlier diagnosis and better focussed care. The British government recently launched a first-of-its-kind national initiative, “UK Strategy for Rare Diseases,” to promote earlier diagnosis and treatment…

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

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doing to support us and who to thank.

Thank you for your support.