General: 01252 416323   |   Fundraising: 07876 682589   |   Support: 0800 046 9832  
Laboratory Open Day At The Royal Veterinary College

Hosted by Dr Claire Russell and the BDFA Please join us on Thursday 8th June (11.00 – 16.00) at the RVC, London, to find out more about the work of Dr Russell’s laboratory, including their work as part of the…

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Regulatory Approval In Europe And The USA For Brineura, First Treatment For CLN2 (Late Infantile Batten Disease)

The BDFA is delighted to announce that in the last week we have received very positive news from the European Medicines Agency (EMA) and the U.S Food and Drug Administration (FDA) on the approval of Brineura as the first treatment…

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Talk To Your MP Before The General Election

Ahead of the General Election, Together for Short Lives have produced a paper for you to share with your local MPs highlighting the needs of children and families living with the impact of a life limiting conditions in the UK.…

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Ollie Meets His Hero, Ed Sheeran

Words from Ollie's Army Battling Against Battens We have the most incredible news to share with you all! Last night our little boy met his hero. Through the power of social media Ollie's story reached Ed Sherran. Ed and his team were…

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BDFA Spring Newsletter & Bulletin

Our latest editions of our Spring Newsletter and Bulletin are available to read or download. Download below Spring Newsletter Spring Bulletin BATcure Newsletter  

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Family Conference 2017 Registration

Booking now open for BDFA Family Conference 2017 - 24th-26th November 2017 at the Crowne Plaza, Stratford-upon-Avon Click here to book your place The BDFA fundraises all year to enable us to provide bursaries for UK member families to attend…

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Laboratory Open Day At Manchester Metropolitan University

Laboratory Open Day at Manchester Metropolitan University hosted by Professor Tristan McKay and the BDFA: Thursday 30th March 2017   The BDFA would like to thank Professor Tristan McKay and his group at Manchester Metropolitan University (MMU) for hosting a very…

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Undiagnosed Children’s Day 2017

On Friday 28 April 2017 we will mark Undiagnosed Children's Day. Approximately 6,000 children are born in the UK each year with a syndrome without a name – a genetic condition so rare that it is often impossible to diagnose.…

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Showing Our Support For Mothers In The Toughest Of Times

As it is nearly Mother’s Day, we would like to show our support for mothers in the toughest of times. Please help us by sharing a photo of you and your children. You can save the image below and add…

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Harriet Is Running The London Marathon

Many of you know Harriet Lunnemann who is the BDFA support and advocacy worker. Not only does Harriet travel the country supporting families on behalf of the BDFA, she also volunteers with families living with disability in Uganda. Now she…

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

Thank you for your support.