General: 07876 682589    |   Fundraising: 07876 682589   |   Support: 0800 046 9832  
Orphan Drug Designation By The European Medicines Authority

A great and much needed step forward for Batten disease, orphan drug designation by the European Medicines Authority, provides incentives for companies to conduct research into rare diseases lets hope accessible clinical trials will follow: To qualify for orphan designation,…

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Together For Short Lives – Children’s Palliative Care Statement

Together for Short Lives have issued a statement concerning the new guideline on children’s palliative care published this week by the National Institute for Health and Care Excellence (NICE), they say: Despite the title, the new ‘End of Life Care…

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Family Conference 2016

After our amazing Family Conference last weekend. We have posted the photos taken over the weekend on out facebook page for you to see and share! We will have our video up very soon!

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Newsletter Autumn 2016 – Making The Difference

Our autumn newsletter is available to read. Autumn Newsletter 2016  

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Research Project At The Evelina London Children’s Hospital

An Exploration of Perceived Quality of Life in Families and Carers of Children with Batten Disease at Different Stages of the Condition We would like to inform you about a research project that is being run at the Evelina London…

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When Ollie Met Harry

On Monday evening, 5 year old Ollie Carroll and his family attended the WellChild Awards Ceremony in London to receive his award for Most Inspirational Child (aged 4-6) from HRH Prince Harry. Brave Ollie, who has CLN2 (Late Infantile Batten disease),…

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Virtual Warrior 5K For The BDFA

During the month of December Virtual Warrior are raising money for The Batten Disease Family Association (BDFA) to commemorate the life of a very special little girl named Amber, who sadly passed away in February 2016. All you have to do…

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Ollie Wins A WellChild Award

We are so thrilled to see Ollie Carroll will receive a Well Child award, congratulations to you all and Ollie's Army Battling Against Battens for your amazing efforts in raising awareness and fundraising. For many parents, life’s simplest joys are found…

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Francis Mills Completes 297 Mile Ride From London To Paris

Francis Mills trained vigorously for the challenge, overcoming the loss of his specialist bike after it was snatched from his workplace in June. Left without his £550 white Trek bike, the fundraiser saw supporters far and wide rush to his…

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BATCure: Developing New Therapies For Batten Disease

BATCure is a 3-year research project funded under a European Union call (New Therapies for Rare Diseases). The goal of the project is to advance the development of new therapeutic options for patients and their families living with CLN 3,…

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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.