General: 07354 486 586   |   Fundraising: 07511 821 181   |   Support: 0800 046 9832  
Stamp Collections

As you are aware, we are now collecting used stamps which we can turn into funds for the BDFA. Simply send us your stamps and we will do the rest! We then send the stamps off to be sold by…

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BioMarin CLN2 (Late Infantile Trial) – Evelina London Children’s Hospital

The Evelina London Children’s Hospital, Guy’s and St Thomas’ NHS Foundation Trust, London has begun recruiting subjects with late infantile CLN2 disease, a form of Batten disease, for a clinical trial.  The trial will examine whether BMN190, an experimental drug,…

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Autumn Newsletter & Bulletin

Our new newsletter and Batten Bulletin is  available for you to download.  Read about our work and our future plans.  Please pass on to friends, families or colleagues and help us raise awareness of Batten Disease. Autumn Newsletter 2013 Batten…

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The BDFA Welcome A New Member To Our Advisory Team

The BDFA are delighted to welcome Professor Paul Gissen to our team of Medical and Scientific Advisors. Professor Gissen is a Consultant in Inherited Metabolic Diseases (IMDs) at Great Ormond Street Hospital for Children, London, UK and a Wellcome Trust Senior Research…

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Our New Patron – Andrew Strauss.

The Batten Disease Family Association welcomes its new patron, Andrew Strauss. The BDFA are delighted to announce that Andrew Strauss has become a BDFA Patron.  Andrew Strauss is one of the most respected and highly rated cricketers in the world…

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Donate to the work of the BDFA

With your support we can help support families living with the devastating diagnosis of Batten disease

Thank you for making a donation to the work of the BDFA.

Please note that from midday on Tuesday 3rd December – midday Tuesday 10th December  the donation link will take you to our Big Give Christmas Challenge page, donations made via this campaign page will be doubled!

The Big Give Christmas Challenge page will appear in a new window for you to make your donation. Don’t forget to tick the Gift Aid box if you are a UK tax payer.

(If you have any issues with making your donation, please contact sarahchandler@bdfa-.uk.org.uk)

The BDFA receives NO funding from Government and are only able to carry out our work because of the strong commitment of our volunteers and fundraisers.

Thank you so much for your support

How your donation can help

£5 a month
provides a support and information
folder for a newly diagnosed family

£20 a month

helps to run our family support services

£50 a month
enables us to run training workshops
for professionals to educate them on
Batten disease