General: 01252 416323   |   Fundraising: 07876 682589   |   Support: 0800 046 9832  
BATCure Online Survey

The BATCure Family Survey is now live! The BATCure survey is now available to complete online and if you are a parent/carer of an affected child, young person or adult then you should have received an email with a link…

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Brineura – Update

Despite the hopeful news of a European licence for Brineura - the new and only treatment for children diagnosed with CLN2 (Late Infantile Batten disease) - NHS England has now denied access to this only hope for children and families…

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Starlight Ball 2017 – Thank You

On a beautiful June evening we were lucky enough to host our very first Starlight Ball.  It happened to be held on awareness day.  We were thrilled to see so many people support the BDFA and also have a fantastic time…

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Awareness Day 2017 – 9th June

On the 9th 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 potential…

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Laboratory Open Day At The Royal Veterinary College

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 BATCure research project. Dr Russell has great expertise…

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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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Make a donation:

To make a donation to the BDFA please click the button below which will take you Paypal.

You can also TEXT DONATE 

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.