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