Batten disease is the most common inherited neurodegenerative disease of children and young adults in the UK. It develops in a healthy child, and causes progressive deterioration and loss of vision as well as epilepsy and a gradual decline…
BioMarin would like to announce that Great Ormond Street Hospital (GOSH) in London will be joining the European clinical study centres participating in the BioMarin BMN190 trial in the immediate future. At the time when GOSH initiates the study, the…
Batten Disease Family Association welcomes Neurological Alliance’s five calls to action for prioritising neurological services The Neurological Alliance has today launched a new report, Going the distance: National calls to action to drive neurological service improvement in England, taking a…
Improving Rare Disease Education and Training for UK Nurses: hugely important initiative to ensure earlier diagnosis and better focussed care. The British government recently launched a first-of-its-kind national initiative, “UK Strategy for Rare Diseases,” to promote earlier diagnosis and treatment…
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…
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…