General: 07876 682589    |   Fundraising: 07745 210212   |   Support: 0800 046 9832  
Opportunity To Share Your Story As Part Of The Bears4Rare Campaign

Bears4Rare is an initiative from Shire which aims to bring public attention to the difficulty rare disease patients face accessing treatments.  Bears4Rare aims to unite the patient voice to highlight the universal challenges faced by people in the UK living…

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New College Worcester Professionals & Parents Day

New College Worcester Professionals & Parents Day Dissemination of the European Education Project of Juvenile Batten Disease Join staff from Batten Disease Family Association (BDFA) and New College Worcester to find out more about an Erasmus+ project to improve educational…

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Family Conference 2017 – Save The Date

The BDFA conference will be held from 24th-26th November 2017 at the Crowne Plaza Hotel in Stratford Upon Avon. More details to follow soon. Look forward to seeing you there.

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

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

Please do leave us a note about the donation or fundraising so we know what you have been

doing to support us and who to thank.

Thank you for your support.